This is at least partially a societal problem. No one should assume that a sibling can take on a another sibling's financial needs as an adult. We should be covering basics for our disabled populations as a first world country.
2nd, this parent has it wrong. Suppose the twins become disabled? Supposed they have a disabled child themselves? Suppose they need to move far away for employment. Adults get to define their own relationships with other adults including their own siblings. Not everyone can be a caretaker. It should be a CHOICE not an obligation. And it's quite a bit maintaining a relationship that is one way without adding other obligations and finances into the picture.
I absolutely agree that the parenting was not painted here in a positive light. I have teens- parenting is hard. But every child's needs are important. Not just the loudest child.
7
A significant gap in the analysis: what if the parents themselves need care, from family or other, as they themselves face the aging process? Are the twins expected to care for what could be two ailing parents and a special needs sibling? Talk about the sandwich generation — that would be a triple decker. And it’s not at all inconceivable as a scenario. Denying that possibility adds to the assumptions being made on behalf of the twins. They should both be able to weigh in on making plans that will significantly impact (read: overwhelm) their lives.
2
You gave your infants the career of caretaker before they were born. You allowed their older brother to abuse them, prioritizing his welfare over theirs. You impressed upon small children that they have a "duty" to their abuser, the "monster" who "rampaged" through their lives (your words, and YOU ENABLED IT), and you're disappointed that they aren't thrilled with the life that you chose for them? Maybe they have different plans. Maybe they don't want to spend the prime of their lives caring for the brother who was allowed to destroy their childhoods, who was clearly your primary concern to their detriment.
Yes, family is important. So is parenting. You think your younger children have a duty to their brother? Well, you had a duty to your helpless younger children, too. And you blew it.
15
@Ali Bravo! Nailed it.
6
I think that some compassion should be shown for the parents as they were when young. It is SO difficult to believe that one of your children could hurt another and also so difficult to manage very young children, even those without behavioral issues. I think that advising the twins to cut ties with their parents is an overreaction to events that occurred years ago, are not likely to recur and were not the result of deliberate intent to harm them on either the part of the parents or Jeffrey. Autistic children can be very quick. My friend's autistic son, at age 14, had my 8 year old in a choke hold so fast that nobody noticed but my own Asperger's son, who was 17 and smaller than the 14 year old. He pulled my younger son away. This same friend has other children and has made a choice similar to the author's. She and her husband placed their son in a care facility and will leave money in a trust for him, but they hope that their other children will continue to interact with him and oversee his care when they are no longer able to. That seems to be what the author is seeking. She is not asking her twins to take Jeffrey into their homes to live or to spend their own money on his needs, but just to interact and oversee. I see nothing wrong in this. I hope my own children would do the same.
3
I cried reading most of the comments. Have we really fallen this low as a society? Family is not a dirty word, and the responsibilities of a family are two-way streets. Taking responsibility for a sibling is not a death sentence. It is not an unbearable burden that will ruin a life. It is a selfless act of compassion and it need not ruin the life of the caretaker sibling. I am appalled at the selfishness and narcissistic pronouncements that siblings are burdens.
I have cared for ill family members, and acted as a surrogate parent fro a disabled youth for a year. Is it difficult to do? Yes. Did it ruin my life? No. It required more advanced planning and realistic assessments of what I could do and what I had to farm out to aides and the state. One does the best one can, and without resentment. I pity the commenters who are outraged at the idea of family responsibility. I hope no one ever needs to be cared for and is treated the way they seem to think the brother should be treated Shame on all of them
7
The twins should discontinue their relationship with their parents. The parents left them open to physical and psychological abuse from their brother. A parent who willfully fails to protect you from obvious physical harm does not merit any consideration.
8
No parent should expect their child to take responsibility for a sibling. They have no idea what their children will have to face in their own lives, with their own families and children. When you have a child YOU are responsible for them, not your other children. My husband has been in counseling for a few years now dealing with toll that growing up with a severely autistic sibling had on him.
17
There is a long story in another publication about the evils of choosing to abort fetuses with Down Syndrome. There's even a fluffy-bunny-unicorns-and-rainbows story from woman who chose to give birth to her DS child. Now five, the kid is sweet and adorable. The mother's point is: "See, (raising him) is not so bad!"
Unfortunately, it IS that bad (or can be).
The reality of caring for someone with a mental disability is grinding relentless work, never a day off, always the fear of what they will do (or what will be done to them).
And, as this piece makes clear, it extracts a tremendous toll on the family.
I haven't walked in Elizabeth Choi's shoes and don't have useful counsel for her.
What I DO know, from personal experience with a family member, is that there are no easy choices. Readers find it overly easy to blame the author--but the reality is that there are NO good choices.
She could have locked Jeffrey away in an institution to protect Nick and Grace's childhood... and then when she wrote about the agonizing decision to do so, people would undoubtedly criticize her decision as "monstrous".
Readers who criticize Choi should themselves "grow up" and recognize that in real life, sometimes there are no easy answers.
13
Firstly, I don't think we can equate all autism diagnoses. The spectrum is wide and vastly different from one end to the other. What strikes me here is the violence the twins have had to endure at no fault of their own. They learned to protect themselves...as children. Not living with a child with a behavioral disorder, I don't know but I must assume anyone demanding you have compassion towards a person that has terrorized your childhood might be difficult and unwarranted, especially if you have children of your own. I would be wary of that commitment and would have to think long and hard about accepting it - which I would to a limited degree because they are my family and I believe in that responsibility. But I would not react well to the presumptive demand and I would find it reasonable for a person to come to a different conclusion.
10
"We have always believed that Nick and Grace should take responsibility for their brother when we no longer can. We have worked to engrave that duty on their hearts, but they accept it grudgingly. I wonder if we failed as parents to instill compassion in the twins, if we somehow hardened their hearts instead of softening them."
===
This is just wrong. It's what my parents did to me. My brother, two years younger than me, was never diagnosed as something in particular, but he was always weird. It was as if he remained a five-year-old child even as the years went by and he became an adolescent. He never did learn to read or write, and he also could not handle money. And throughout my childhood, my parents made me responsible for him. By the time he was fifteen, he was mean, stubborn, and stronger than me.
Compassion? I hated him all my life, and how could I not? My status at school was zero because of him. Girls mocked me and wouldn't go out with me, and I had to fight so many kids who bullied him that I really had no friends. I wasn't a saint. I was just a kid.
I was relieved of this sentence when he died in an accident still a teenager. I wish I felt guilt but frankly I don't. My life's been hard enough without being someone's life-long caretaker.
19
I sincerely hope that "Jeffrey" will never read this piece. You paint him as a burden on everyone and treat him as a bunch of symptoms. As an autistic person, it makes me feel awful.
I suggest you to reach out to the autistic community. You could start by contacting the autistic managed association "ASAN" and by watching videos made by one of its members, Amythest. You can find them by typing "Ask an autistic".
Accepting completely your son and his autistic traits is the first step to take to allow your other kids to consider him as their brother. You treated "Jeffrey" as a burden since day one. They saw it. They felt it. You need to re-think your life and your opinion on autism.
11
You are wrong to make your younger children responsible for Jeffery after you are gone. They put up with him while they were growing, at your insistence and now you insist they carry on after you are gone. They will resent you and him if they are tied to him when they want to move away or live their own lives. Can't you make a case manager or lawyer responsible for him when you are no longer able? Your younger children put up with you letting Jeffery interfere for most of their childhood. Free them now, before they resent you and him.
19
My adult autistic sister receives full time care in the same way this article describes Jeffrey; however, many families cannot afford the luxuries described here and so are forced to place their disabled adult loved ones in sub par homes and many times dangerous situations. This is not the fault of the parents or the siblings, but the result of living in a county that does not value disabled people and offer better care for them. Choi does not help fight against the lack of support and discrimination of the disabld as she describes the "burden" her children will one day endure and all the hardships they went through as children. It's every person's right, disabled and nondisabled, to have a fufillng and cared for life. That does not mean the family is responsible for their care. Also, what is missing from this conversation is the love and joy, as well as value and appreciation for Jeffrey, or anyone with a disability. I would be horrified if my family thought they were leaving me with what they thought was a "burden" in caring for my sister. My sister too had many difficult behaviors and upsets growing up autistic, but I would never consider being responsible for her care after my parent's death as a burden. She is my sister and I would care for her just as I would a nondisabled sibling. It seems that Choi has a real misunderstanding of autism. She seems to see autism as a punishment instead of something that can be challenging but also a great joy.
4
My 27 year-old son has Down Syndrome. His two younger siblings are tolerant, sometimes tender. They are not responsible for his care. If they were to decide they wanted to undertake it, that would be wonderful. But I would never suggest to them that they are responsible for him; shouldering them with that would impact very aspect of their lives and relationships. That's my job, not theirs.
18
I read this with such sadness. I understand Ms Choi's desire to protect the son who is clearly the neediest, but I shuddered in horror at the assumption that came across in the article that her twins' lives were of worth only as carers for their brother - their brother who has been allowed to be abusive towards them for most of their lives. Who was protecting them?
My husband's family has a similar issue, but unlike Ms Choi, their parents felt - and strongly said - that it was THEIR responsibility to look after his sister, and that when they were gone they would provide as best they could, but M's siblings were not to give up their own lives for her. This freedom to go, to do their own thing, not to be tied to her, has meant that the ties have been chosen, the love is freely given, and that M has, now their father is dead and their mother very aged, two powerful advocates in her siblings who do it through choice, not duty, and do it all the better because of that. I wish Ms Choi had given her younger children that choice.
There is a powerful TED talk about "Glass Children" - the ones people look through rather than at because of their siblings' needs. I recommend viewing that highly - but it's not easy.
17
Like it or not, it's absolutely not your twins responsibility to care for their brother. It would be nice if they could help, but they have lives too and have a right to not be tied to a disabled brother.
19
There's no guarantee that your children will outlive you, or that their lives and careers won't take them far away. You can't force them to care for their brother, to be on tap and their lives on hold if he needs help. What if you hadn't had the twins? Make your plans for your son's care as if there is no one else; if your other children choose to help later, that's a benefit. Trying to instill guilt is a really nasty, manipulative thing to do.
26
Elizabeth Choi, this story about your twins was not yours alone to tell. The very private decision about the level of responsibility they wish to assume is theirs and theirs alone. Did you give this story to your children to read before submitting it for publication?
8
I have a 26 year old daughter with Down Syndrome and autism. For those people who think the Down syndrome is the more challenging condition, please reconsider. In the case of A, autism includes intensely violent outbursts, fire starting, dumping $ thousands of both wet and dried food all over the house, running with knives, throwing rocks at people, trying to jump out of 2nd story windows, and destruction of the contents of entire rooms in my house. She peed all over the house and wipe her feces on the walls. The doors to the outside had to be bolted, all rooms in the house locked and all cabinets in the kitchen locked. I walked around with a warden’s ring of keys. She spent weeks at a time in a psychiatric ward until a cocktail of medication was developed to reduce her behaviors. This took years and I had little or no help because her father abandoned her when she was 5 and my (much) older children left for college. I was living in Colorado where there was little assistance for the developmentally disabled and none for children with mental illness. When I moved to Massachusetts, that changed. A is now in a group home where she is thriving and functioning moderately well on 2 anti-psychotic medications and there is sufficient staff to deal with her behaviors. I would never expect my 2 older children to care for A. I consider it entirely unfair to foist that sort of responsibility on any individual.
16
You knew the oldest had autism, and you had more kids anyway.
Now you expect, demand, that your two youngest care for their sibling. They did not choose to have children—you did.
You don't care about any of your children; it's all about what you want, what you expect, what you demand.
If I was your daughter, I would join the military and never speak to you again. I would move cross country and leave no forwarding address.
Your choices are not for others to clean up. In the most basic ways it is you who is still a child.
The world does not exist to serve you. Grow up.
12
I couldn’t agree more.
5
In fairness, he was diagnosed while she was pregnant. That said, I have deep sympathy for her twins, who seem to have been raised with the startlingly clear message that their needs and wants should always come second to their brother's needs and wants, and that their safety and their importance in their parent's lives was secondary.
10
The piece says she was pregnant at the time of diagnosis.
5
I have the opposite situation of the writer, an older son (14) and identical twin girls (12) with severe autism who are non-verbal and very low functioning . My son and his two cousins are growing up knowing that they will have to help look over the girls and manage their finances as well as health care decisions. However, I want my son to have a life without the constant presence of Autism. My husband and do not plan to have the girls live with their brother when we are gone, instead we are starting to explore housing ideas now, even though we may have 15-20 years before we need to have them live somewhere other than with us. My son deserves to have a family with some "normalcy" (whatever that means). I want him to be able to vacation with his family one day without having to worry about who will stay with them. Hopefully we will have enough finances set aside to to care for them so he won't have to worry about it. He didn't get a choice in this and I want to make the burden of caring for them as painless as possible.
4
My brother is very high functioning. His life is what most parents of children with autism dream for their children. Stable job, long time partner, and independent. In my 20s although I started to think about my future my brothers was not on my radar. Now 20 years later I can see that he will need help with big picture stuff. He is capable of the day to day but if there was a crisis he would need help. Wouldn't we all? I plan on supporting him where he needs it. I am not resentful nor do I feel this is forced on to me in anyway. We are family. We take care of each other.
7
We need to consider that not all adults with disabilities have siblings to help with their care. Step up lawmakers and society!
5
As the comments show, this is a serious problem in this country. We need to face it as a society, not as a nation of loners struggling against the hostile presence of other people, as os many commenters suggest.
Thats what government should do: make it possible for all of us, no matter the obstacles, have a decent opportunity to make the most of our fragile lives.
6
We have never had the expectation that our younger son would be responsible for his older brother, who has an autism spectrum diagnosis and epilepsy.
We have a Special Needs Trust in place and someone will need to be the trustee and take over Guardianship, after my husband and I pass away. Options run from our younger son, to other younger family members, to a professional trustee through a financial institution. We have only started asking questions in order to find the right fit. We think it will be best to have someone manage the finances and another act as the guardian who oversees his housing, health, and happiness.
I think if younger or older siblings want to step into the role their parents played in raising the sibling with a disability, that may well be the best situation. I don't think it is wise or fair to tell young children that they are expected to take on such an immense responsibility. They may easily resent the burden you are placing on them. Let them grow up first and then discuss the possible situations with them.
I know that it's all very difficult. Not a day goes by that I don't wonder what I can do to make the inevitable transition one that will bring peace of mind to everyone in the family.
16
When my parents were alive, I often told them I would take care of my mentally disabled brother once they're gone. So far I've kept my promise: I've done that for the last twelve years.
I'm fortunate to have siblings who are willing to help me out. To be honest, I do feel constrained when I cannot do what I want (to travel more often, for example). Sometimes I worry about my brother and wish he would die before me. All my siblings are married and it's hard for them once I'm gone.
5
No, no and no. It is not a siblings' job to care their brother unless they are willing to do so, and no one should be "guilted" into it. and yes I do have two sons who will need some care after we die. We are just entering our 70's so we have given much thought to what will happen when we die. We have hired an attorney and there is enough money set aside for both of our boys to live comfortably. They don't need the level of care your son does, and they both have jobs and drive, but they will need financial advice and friendship from their sisters. We have talked to the girls and one of them is more comfortable giving financial advice and the other is more comfortable with friendship. This is their choice. Although I really hate it when well-meaning (and not so well meaning) friends give advice on my boys, I have to say you have fallen into a trap all too many of us with children who have disabilities fall into; we often expect too much of their siblings. The article seemed to indicate that the twins weren't always protected from Jeffery and may have some real and understandable resentment towards him. Although I agree with Ben, ASD isn't a death sentence. and my Asperger's son is completing a Doctorate in Math, many ASD kids have different levels of ability. My son still has a lot of trouble with life and social skills, but he is happy and independent. Others' may need a lot more help.
13
Your other children have no responsibility for their sibling. You are the parents. You are responsible for your children. Loading your younger children down with the burden is wrong. They had no choice in the creation of their elder brother. No choice, no responsibility.
20
Sounds like something who cannot relate would say.
1
I agree with him and I can relate because I watched relatives go through a similar situation. It's grossly unfair to expect siblings to give up their lives to care for a disabled sibling. The parents need to plan for this young man's care and stop trying to pass the buck to their other children. The twins weren't born to be servants to their child with autism.
4
He is not his siblings' responsibility.
13
Elizabeth hi
The question "What happens to my loved one when I'm gone" is central to our lives as parents with kids who have special needs. Inclusion is the 'gold standard" or at least that's what the orthodox view is. "Sending Jeffrey" away you write is 'shamefully" enticing. I understand where that feeling comes from but it is not entirely fair. When Tessa's parents died (see my link) we were told that her mum had told her 3 sisters " If anything ever happens to me don't ever send her away". Her sisters now have their own lives with little ones of their own. Part of them wants t have Tessa (now 30) live with them - or with us. But they know it would be really tough. A lso Tessa would inevitably be a camp follower. We have taken a different view. What Tessa most needs is a sense of self, self-confidence, a sense that she belongs and a sense that she contributes. Like you and me. The solution we've come up with a Camphill community not far from where we live. She has fiends, a rich cultural life, meaningful work, goes away, goes to movie, goes to the pub! We (her sisters/friends and family) see her very often. She is very much part of lives. More important she is slowly settling in and developing her own life on her own terms. The problem with ideology is that it leads to guilt and narrows our choices. Camphill may not be right for Jeffrey. But please look into it. https://nyti.ms/2HeBzbM also http://bit.ly/2LdAbZo
5
Howdy-do. Guy with formally diagnosed Autism Spectrum Disorder (Asperger's) here and I have to ask this as someone who grew up having difficulties with social skills and boundaries...and this is probably one of the most irritatingly self-serving article about people on the spectrum that I have EVER come across.
From what I gather, Jeffrey Choi seems to be on the higher functioning end of the spectrum. But nowhere in this article did I see any mention of the author (or her husband) trying to get their son on any kind of consistent therapy regimen like occupational therapy, life skills coaching, or even trying to find and encourage a skill or interest that could possibly lead to a career or live with a greater degree of independence. It seems that once they ruled out medication alone or the possibility of institutionalization, they just decided to throw up their hands and view their son as irreparably damaged goods who will never be able to live a fully independent life or look forward to anything more than a group home and minimum wage labor.
Autism is far from the death sentence people crack it up to be. People on the spectrum are capable of amazing things with the proper guidance, access to resources, and people who are willing to believe in them and their potential. I wish I could say the same for Jeffrey Choi.
To paraphrase a line from Metallica's "Dyer's Eve," this guy's parents have all but clipped his wings before he could learn to fly.
16
Maybe there is a cultural difference here as I'm not American but I'm surprised to see so many responses rejecting the idea that Jeffrey's siblings have any duty towards him after their parents are gone. Why would they not? He is family. His siblings did not ask to be born with an autistic sibling, sure, but his parents did not ask to be parents to an autistic son either. It's just a fact of life and the burden falls on the whole family, not just Jeffrey's parents.
The twins' parents raised them well, with many opportunities, and seem to have done their best to set up care for Jeffrey that does not impinge on the rest of the family for now. What more can one ask?
I have a sister with learning difficulties. My parents have not set her up well to live alone. They are 80 now so I know that in the next few years, I will have to step up to help my sister out more, either financially or with advice. Unfortunately I live 5,000 miles away so it will be harder for me to do so but I feel I owe her some debt of care since we grew up together.
That is how I see it at least, coming from a more traditional, family-oriented culture. Life isn't fair sometimes and we all get dealt different hands. You don't get to escape that just because you are 'only' a sibling.
10
Where is the wisdom? Where is the remembrance of what it is like to be in one's 20s. Obvious the twins are involved in the freedoms of adult life, education, careers, socialization with the opposite sex. Ms. Choi & her husband are still in their 50s, young by today's standards, capable of providing for Jeffrey emotionally and financially as well as planning for his future when they have passed. May you all live long lives, however in many decades from now I have no doubt Jeffrey's siblings will step up when necessary.
9
Your children aren't an insurance policy to take care of you or your other children. It's incredibly unfair to place this burden on them. Plan your and your son's life without the assumption that your younger children will shoulder that burden. Maybe they'll want to take that responsibility, maybe they won't. Don't make that decision for them.
26
It’s sad to see someone call a family member a “burden”.
2
This article paints a picture of a life where the safety and happiness of the twins was almost completely subordinate to their brother's needs. Going just on this article, I am amazed that the twins remain involved with the family. And what other word would you use for a difficult and often thankless task?
3
Yes. But that's what it is. It can also be a privilege, a joy, a pain in the butt, a game-changer. And it's not the same for each family.
I am a doctor working in mental health. I found this article engaging, and the author's love for all her children is clear. It speaks to the difficulties parents of adult children with disabilities have with regard to future planning, the question of 'when I am gone'. The author has proactively sought to address this at any early stage (not always the case).
I don't know what the author's cultural background is and how that may shape her expectations regarding familial duty, if at all. In general, parents may assume or hope that siblings will be able to take their place when they die or become incapacitated, without necessarily confirming siblings are willing to do this. Ideally, there needs to be an open discussion about what role siblings are willing or able to play.
The parents in this article do not appear to have offered the twins a choice. It is not unreasonable for the twins to limit the responsibilities they take on, and the degree of contact with Jeffrey. In 10 years time the twins may have other commitments, possibly their own young families. An open discussion could allow the author to explore other options for Jeffrey's care e.g. a trust fund to manage finances.
24
There's little we can do after death to assure continued care of a child at a level we would approve. We can plan, save & arrange but once we're gone it is out of our hands. The siblings may rise to the occasion or not. This is the heartbreak of having a child who is never able to achieve autonomy.
4
Choi worries that she didn't "instill" compassion in the hearts of her twins. Yet, when the twins were teens their mother brought Jeffrey to their school performances where he shouted "inappropriate comments." This would have been a disruption for all of the students, and their parents, as well as a stressor for the twins. Where was her compassion not only for the twins, but for everyone in the performance and their families?
Our children mirror what we do in our own lives, not what we attempt to "instill" in them.
29
Should he have been left at home like a dog? We no longer lock away our children with Down syndrome or autism. I think most of us can identify it when we see it and have compassion for the parents in an audience.
4
If your baby starts crying in a crowded theater, do you stay? I am sympathetic to parents with infants. But is it right that they should be allowed to make the experience unenjoyable for everyone simply because they cannot regulate their behavior? I think not. Parents have a responsibility to mitigte the bad behavior of their children. That responsibility becomes more or less stringent depending on location. A screaming baby in a supermarket is much different than a screaming baby in a quiet theater. If your child cannot act appropriately in a given situation, the social contract dictates that you remove them. That doesn't mean lock them in a room and never let them out again.
3
"Should he have been left at home like a dog?"
I find this really offensive. My brother, who is autistic, won't sit down for more than 10 minutes at a time. Taking him to a school performance would have guaranteed a disruption, as he and then my mother got up, paced around the auditorium, left, came back, etc. My mother always arranged for him to stay home with someone, which required careful planning because there were only three people in the world whom she trusted to watch him.
My brother is not a dog, and my mother, who loved him deeply, did not see him that way.
17
Such a tough situation. I think you are doing your best to meet all of your kids' needs. I think it is reasonable to expect your twins to take charge of their brother's care when you are gone - not that they should have to devote their lives to it, but to oversee it.
3
I am glad this is a problem I will not have and thank the author for her openness.
I wonder, if perhaps the author talks too much about the future with her kids at times she shouldn't, and perhaps that is the reason for the "brush-off"? Granted I know little about this problem, but I do recognise that feeling from conversations wiht my own kid of their age. Usually it means I am expressing the churning in my head at an inappropriate time, rather than an unwillingnesss for my kid to actually care about the important problem.
My guess is these two will step up, but that there's nothing more to say beyond logistics.
Perhaps start to include them in decisionmaking?
5
As a sibling of a brother with special needs, I'm horrified by all the comments that are suggesting the author is "robbing" her other children of their future. They certainly have a vastly different idea of what it means to be a family than I do. When I was still in high school we began discussing who would take care of my brother if something ever happened to my parents and when I turned 18 I signed the papers that would allow me to be his legal guardian. And yes, there are a lot of ways in which this has shaped my life. In my 20s I lived abroad because I knew it would not be an option for me later. Early on, I had to explain to my now husband that my brother is part of the long term package and that I will never be able to settle permanently in a place that is not driving distance from him (I have been lucky enough to marry a man who accepts my brother as his own) Because my brother is a person, a wonderful, kind, loving person who did not ask to be born with a severe intellectual disability, and who is doing his best to live a happy, productive life, as we all are. When I read this article, I see parents who have done extraordinarily well. Most people have no idea how difficult it is to get an adult with disabilities into an independent living situation. There are far fewer homes than there are adults who need them. I see parents who have done their absolute best for all their children, and siblings who have the chance to grow into themselves and their responsibilities.
38
Wonderful post! You are a great person for your attitude and actions! Your parents must be so proud!
6
your comment brought tears to me eyes. I have two young children, and I hope they grow up as compassionate as you. I have been reading all the comments, and haven't really understood why so many people are so quick to proclaim that the siblings don't have any responsibility. It's certainly my not fair on the siblings, but that is the card that life dealt. it's family. I wonder how much of this is cultural difference. my parents would be horrified if I didn't assume responsibility for my sister if something were to befall her. And I agree.
2
I have a brother with autism. My parents have done everything possible to leave my two typically-developing siblings and myself the resources to care for our brother. We absolutely embrace the fundamental truth that making sure he is safe and cared for is both our responsibility and our gift to him and to ourselves. Fortunately, we will have the resources to ensure that we don't need to provide direct care. This is a blessing because independent living situations are better for all involved, but may be more expensive. It may be difficult for a young person to embrace the role of the protector, but I have faith that they will grow into it.
15
My sister has pervasive developmental disorder and also will need support for the rest of her life, though my parents have positioned her much as you have your son. I’m fortunate that she has a condo, a job (even if it’s never quite secure), friends, and a strong public transportation system. She and I are both adults now and I live in Baltimore, while she lives near my family in the Chicago area. Some day, I know, I will need to move closer to her and that will disrupt the lives of my husband and children. I feel guilty for resenting that and for, as you say, “the detached kindness” with which I treat her. But I’m not unaware of the complexities of our relationship and my feelings. I suspect your children have the same nuanced emotions about it. They can be hard feelings to talk about, especially with parents who have lived so selflessly for their children. It’s not too much to expect your children to look after your son, but their feelings are layered and valid.
9
I am the sibling of an autistic brother. I am the older sibling NY 6 years. He lives with me. Growing up, I was his caregiver when my parents were at work. I was sometimes the caregiver even when my dad was home. I've lost count of the number of fights had over homework and chores and number of restaurants we would leave because he had a melt down about the food. I love my brother and worry constantly for him. Of what would happen if I'm not here or parents weren't here. It's terrifying. While, I continue to help him, it doesn't change my childhood. It doesn't change that sometimes deep down I wish he wasn't autistic because it would be easier and less stressful. I love my brother, but sometimes I think how much I would have loved an easier childhood.
16
One of my co-workers and her siblings have to care for a disabled brother. He was born normal,but encephalitis gave him brain damage. She remembers when he was hospitalized and nearly died. However, it left her brother with severe learning disabilities and he would get angry and frustrated when he couldn't do things or did not understand what was going on around him. Finally, her mother became too old to care for him, so that had to put her mother in assisted living and find a facility for her brother. Of course she and her siblings don't like dealing with either her brother or mother. Her mother developed dementia and regularly says hurtful things. Her brother gets angry for not getting his way. However, it sounds like you have done a lot to help your son live as independently as he can. You have done what you can so that your other children just need to manage his care rather than be direct caregivers. It is all that you can do.
2
First off, I commend you for writing this piece. Second, I commend you for figuring out the system for your son in Maine. Third, you are a family, this is how it works.
Obviously our family sits in a similar position, and from my seat you are doing everything right. Or about 97%, as we all have room to improve.
8
Ms. Choi, you are stealing your twins' future. You will teach them nothing but resentment if you force them to care for their autistic brother. It is YOUR job as a parent to make sure Jeffrey is provided for--it is Grace and Nick's responsibility to give up their lives so completely. You know how hard it is to take care of jefrey--sounds like it is a full-time job. You owe it to your other children to have another full-time provider in place for Jeffrey so that Grace and Nick can actually appreciate their brother, not resent him as a burden.
Your children have no moral obligation--they deserve a life not given up to provide full-time care. You and your husband are the ones with the moral obligation for Jeffrey's care after you both die.
And, the issue of your children having to protect themselves, on top of this? Your parenting appalls me.
24
Your words sound completely foreign to my experience.
I am a close friend of a man who, with his wife, took over care of his brother-in-law. The disabled bil was just part of the deal when he married this family.
His seven and nine year old have more compassion than you.
12
Wow. I'm glad you are not one of my family members, SN. Your comment makes you come across as cruel and heartless - to strangers such as Ms. Choi as well as to your own family.
What on earth is family for, if not to look out for and take care of each other?
5
This is what is called family bond, sharing the good and the bad times. As wrote the author the parents do not want their twins to take the « burden » of their brother but to show that they are family, they have empathy between each other’s
3
Sad to see how judgmental these comments are.
Siblings and kids aren’t a choice. You get who you get. It seems like the only way to deal with this is to have the siblings assume guardianship when the parents die. It’s not like the USA has a safety net for families who end up with disabled children.
I cannot imagine how hard it was to raise a severely autistic son and twins. I have bg twins only and it is hard enough to get by with just them.
Much love to the author and her family.
11
I really appreciate this very honest piece. I wish that when talking about people with disabilities, including one’s son, people would use people first language. That means putting the person before the disability: so saying their brother with a disability instead of “their disabled brother”. The former puts the person first. The latter defines the person by their disability. There are many great resources on this on line but here is just one: https://www.disabilityisnatural.com/people-first-language.html
3
I just read the follow up reply on "Well Family" and feel that the comments that you added clarified enormously your relationship with all of your children and your expectations for all of them. That was missing in this original piece.
1
I am your two twins only I was older and only 1 sibling. I have a strong reaction to push back on the responsibility and burden you feel it is appropriate to put on your children. I think it is fine if they chose to play that role but not have it forced on them and implicitly guilt them into it. They have a right to their own lives and I’m not sure you are giving the freedom to be honest with you about what they would choose of their own accord.
Though i never hated my brother (who died at age 22) I resented him. He robbed me of a normal childhood and adolescence. As you describe it was impossible to have friends over and also to go out with friends on the weekends as I was the only babysitter who could handle my brother. I lost my parents- had to grow up very fast as my brother required so much attention I basically raised myself from age 7. My parents almost split up from the stress.
Don’t do this to your kids! You are the one who had your Jeffrey, not them. You are responsible for making sure he is taken care for life. Don’t rob your twins of their chance to have normal lives- i’m sure they will have their own challenges and burdens aplenty without the huge expectations you are placing on them.
31
There is no normal. It is a myth. But there Is selfish.
1
What a lovely and thoughtful reflection on a subject too often fraught with pitfalls, guilt, shame, judgment and recriminations. How fortunate for Jeffrey to have conscious parents and siblings who have each other for support.
5
I am a single mom of an autistic son. He has no siblings. If it were not for my own siblings voluntarily helping me out—emotionally, logistically, and financially—we never would have made it this far. I cannot thank them enough for what they have done for me and their nephew—simply out of love and a sense of all being on the same team. My son will surely outlive us all, and I don’t think any of his cousins will want to be responsible for him. I can only set him up as best I can and hope that the compassion modeled by their parents will spur his cousins to at least check in on him and invite him to family celebrations. They may not; in the meantime I appreciate my own siblings beyond measure.
11
I don't have a child with autism, but I do have one with an emotional disorder. Life will likely be more challenging for this child than for her sibling, but she is making progress.
I feel tremendous compassion for the writer, and distaste toward some of the judgmental comments here. These parents are planning carefully so that their special-needs son will have financial resources and support when they are gone. They are not dumping the care of their oldest child on the two younger ones, by any stretch. As a family, you try to do the best you can when faced with the unexpected, with love and patience.
Some of the people calling this writer abusive should really examine their own biases. I am surprised and disappointed at some of the cruel remarks.
7
I'm sorry for everything you're gong through as Jeffrey's parents, but what you're describing is nothing less than abuse of your other children, both when they were growing up and now when you want to force them to take responsibility for their brother when you are gone. I hope your now-adult children will find it in their hearts to tell you NO up-front and forcefully now, while you still have time to make sure Jeffrey's needs are taken care of after your passing. Your sense of entitlement in all of this is beyond appalling to me.
30
I would not have used language this harsh, but I agree with the substance of this comment. The twins did not volunteer to care for their brother. They deserve lives of their own. And after a lifetime of apparent indifference to their brother's needs, why would you want to leave Jeffrey in their care? Please make legal arrangements for a guardian for Jeffrey. And please also pay some attention to the twins as people in their own rights, not just as potential caretakers for their brother.
3
Really, I am appalled by the harshness of some of these comments. Calling the writer selfish and cruel! Saying that Nick and Grace have every right to develop themselves. Does self-development not include feelings of empathy, compassion and yes, love for a brother, parent or sister with physical and/or mental disabilities, even if the person in question is difficult to handle? I've mentioned "parent" as well, because what are Nick and Grace supposed to do when their parents get old and maybe disabled or suffering dementia? Dump them? Go on living their own life, without any care? This world does not need so many self-help books, but books about compassion and empathy!
23
You can not force familial duty on children. You can only model patience, kindness, hope, and forgiveness in your own life.
Unfortunately, that is not what I did as a young parent. When I was most high minded about what my children should and should not do, I made my worst parenting mistakes. IMO, not a bit unlike the parents in this story.
7
You and your husband have the obligation to see to Jeffrey's care when you are gone. You do not have the right to tax the twins any further; they're entitled to their own lives, the fruits of their own choices. Jeffrey wasn't one of them. As parents, you chose each other; you chose to have children. Your children had no choice. You have no right to confer the caretaking burden upon them. And nothing gives you the right to air your grievances about their lack of enthusiasm for taking on your job in the pages of the NYT.
33
Totally agree, how cruel to burden your twins in this way.
16
Some of the most liked responses to this column seem to want to past judgment on the author's rhetorical question, "are we asking too much of the twins" as if they had the answer to some of life's impossible moments.
7
Oh my, how I related to Ms Choi's parenting experience. I have a 21 year-old son with autism and bipolar, and a 19 year-old daughter who is completely traumatized from his?/her childhood. The one big difference is that we have always been clear that we have no expectation that she will care for her brother in adulthood. We have tried to plan our estate so that he will be cared for. I only hope that they have a relationship that lasts over the years, and if she cares for him that will be an added blessing. As unwittingly as we came to our parenting experience, there was no way I wanted our daughter's life to have that same quality of being blindsided - even predetermined.
What touched me most reading this article was being reminded of the conflict I constantly struggled with over how to parent each child simultaneously. My daughter was never able to hold her own against her brother's immediate demands and needs, much as we tried to make an extra effort to attend to her. She often would remark that she wasn't "special," and her fantasies always revolved around being "hurt and sick" - a sure way to get the attention she deserved and needed. We all do our best of course, but I have many regrets today, while she struggles with self-harm, an eating disorder and an emotional detachment that is the result of years of trying to cope and make sense of such an invalidating environment.
31
Every day in nearly every news outlet we see stories about our homeless crisis here is the US. One of the many reasons someone becomes homeless is likely because no one in their family wanted to take on the responsibility for caring for someone with a disability or in crisis. The author is, I believe, trying to help her other children understand that it is their duty to take on this responsibility. If more people did, then we might have fewer homeless people. As Christians, we are called to help others. As civilized, secular humans, we need to bear the responsibilities of helping others unable to help themselves. If we do not, then we cannot sit back and decry society's problems while doing nothing to ease burdens where we can. No, the twins didn't ask for this responsibility; who ever does? But if we each do not step up to the best of our ability when called, then who will?
4
I cannot fully relate to this situation, but I have a younger sister who has it engrained in her psyche that my parents only had her so that I would have a playmate at home. We're in our mid-thirties, and she still believes this to her core.
This author has essentially admitted having additional children so Jeffrey will be cared for. That's extremely selfish and cruel. They are their own people, who as many have pointed out, lived in fear of their brother. I did not get the impression Jeffrey was ever admonished for his treatment of them. Toddlers accidentally killing smaller siblings is not unheard of. Autistic or not (and I have a sibling with Aspergers) at least Nick and Grace would feel their parents are there and will protect them. Being born without Autism doesn't automatically mean they were happier children. Sounds like the opposite.
5
I believe the author was pregnant with her twins when Jeffrey's autism was diagnosed - she notes this at the beginning of the essay. Ms. Choi did not have her twins to benefit Jeffrey, and she doubtless loves all hear children dearly. To suggest otherwise is simply unfair to all concerned.
45
Ah, then my apologies. Again, personal experience led me to an unfair assumption, and that was poor judgement on my part. I was attempting to share a personal anecdote of how birth order can have a more profound effect than one might think.
10
As a well-short-of-perfect mom of a child with severe autism, I'm certain I would be the subject of some harsh judgments by these readers if I were brave enough to share my personal experiences the way Ms. Choi has. To those who call the writer selfish, you have an extremely incomplete picture of her life and experiences. You should think about this before criticizing her in such absolute terms.
50
I. Totally. Get. It.
8
Paraphrase: "The twins are reluctantly accepting the huge responsibility we are foisting upon them, instead of embracing it wholeheartedly as I am emotionally demanding, and so I decided to shame them into compliance via an article in the New York Times."
I wonder if she will also add this article to her resume?
Shameful beyond comprehension.
52
Throughout their lives, brothers and sisters may play many different roles in the lives of their siblings who have disabilities. Regardless of the contributions they may make, the basic right of siblings to their own lives must always be remembered. Parents and service providers should not make assumptions about responsibilities typically developing siblings may assume without a frank and open discussion. "Nothing about us without us"— a phrase popular with self-advocates who have disabilities — applies to siblings as well. Self-determination, after all, is for everyone — including brothers and sisters. I encourage typically-developing siblings and those interested in their concerns to visit https://www.siblingsupport.org/
7
Oh Nick and Grace. I hope you read this. As a fellow sibling in a very similar situation, my heart aches deeply for you.
I'm sorry you grew up with a sibling who was violent and unpredictable. I'm sorry it wasn't safe in your own home, and that you had to learn to defend yourselves at such a young age. I'm sorry your parents didn't understand or acknowledge the fact that your needs were equal to your brother's, and that they had a responsibility, not to engrave duty on your hearts, but to protect you.
Nick, I'm so sorry that your parents thought it was funny when your brother called you a "sad, strange little man." That must have cut so deeply. Grace, I'm so sorry that the physical boundaries of your friends were violated by your brother. I, too, lived with deep embarrassment following incidents where my brother behaved inappropriately toward my friends during sleepovers.
I'm so sorry that your parents have laid this burden at your feet without consulting you, and without taking into account your your careers, your partners, your potential future children. I'm so sorry they see this as your duty and that they have placed guilt upon you if you cannot accommodate their demands. I'm sorry that after a lifetime of violence, harassment, embarrassment, pain, and turmoil, your parents believe it should be easy for you to turn around and become caretakers without question.
I'm so, so sorry. Please find our community - Sibnet on Facebook. You are not alone.
68
Everyone is coming down pretty hard on the author, but what exactly is she asking of her twins? Basically to monitor a check book. She's not asking them to take Jeffrey into their apartments. Jeffrey is in special needs apartment, so he's not going to be moving in with Nick or Grace. The author says that there are disability payments in place to cover expenses (and life insurance to cover the balances due beyond the disability). Granted, he might need to find a new group home or living situation in the future, but filling out those applications is not the same as forcing Nick and Grace to take Jeffrey into their homes. Asking a sibling to pay some bills (with money that has been set aside) and drop by on the occasional holiday to make sure that the living situation is still safe is not a huge burden. I'm not saying it was easy for Nick or Grace growing up, but let's face it, life isn't fair.
Also, I wouldn't read too much into Nick and Grace's lack of involvement at age 23. Most young adults in their early 20s are very much self-involved in their own lives, often unintentionally so. And that's OK too. Nick and Grace at age 55 might feel differently from 23 year old Nick and Grace.
30
It seems (to me, at least) that the reason people are coming down so hard on the author is that, given the anecdotes she's included in her essay, the household in which her children grew up was in many ways the Jeffrey Show, with Jeffrey's needs given a bit too much priority over those of his siblings. Most of us understand that the supports available to parents of kids with autism (speech and occupational therapy, ABA therapy, respite services) were less widely available 20 years ago; even now, these services at best help only moderately with the challenges of raising a kid who has significant special needs.
Still, some of the things the author recalls are the types of things that can wreak havoc on family relationships, even if everyone was doing the best that they could at the time. There was, evidently, a period where Jeffrey would kick his younger siblings; I don't care what a parent has to do to manage this sort of behavior, but I do know it should not happen more than once. The safety of Nick and Grace should have been non-negotiable from the start. When the author recounts parental amusement at Jeffrey's calling Nick "a sad, strange little man" - ouch. Kids remember that sort of thing.
Perhaps the author's best choice at this point is not to repeatedly point out her twins' duty to their brother, but to instead try to find ways to make some amends, repair some of the damage to the family fabric. Then maybe her twins can find room in their hearts for Jeffrey.
32
My lasting question is: Why drag up painful memories and catalogue what she sees as their shortcomings of compassion when they’ve already agreed to take on this responsibility for their brother? Why shame two 23 year olds in the New York Times? As a sibling of a disabled adult myself, I am very aware of what is expected of me in the future— even on days when I am not particularly joyful about it. But this article, published so publicly, would be too painful for me to brush aside.
25
Here, here.
2
The last line of your essay says everything about parenting- typical. or atypical kids.
all we can hope for is that we have done the best we could.
Blessings to you and your family.
9
In some of the societies whose cultural values some commenters here extol, it's common for at least one daughter to be kept unmarried, at home, to be the lifelong servant of the parents and everyone and anyone else visiting or residing in that home. As for eldest sons--they often support a huge extended family.
Western cultures evolved somewhat to understand that neither sons nor daughters ought to be household slaves, but individual families haven't always made it to that point.
Siblings have the right to make their own happiness; they may have never had much of it within the family dynamic. Most parents of disabled children can't even dream of a trust for any of their kids. Siblings of a disabled child may never ever get enough of what they need to enjoy even a comfortable life.
And society? How much, even with the best will and motives in the world, can we collectively pay for, with life being extended at both ends continually and, unfortunately, expensively? What's left for those in between?
9
Jeffrey is having a good life thanks to his parents monumental and indefatigable efforts. You have set a sterling example for Grace and Nick. They too will move mountains for their own children if faced with such challenges. Moreover, they are fully cognizant of their responsibility to their brother when you and your husband can no longer be his advocate. So please stop reminding them of their "duty" to care for Jeffrey, and trust them when they say they will handle it. Respect them.
12
It's amazing to me that anyone would question the notion that siblings should look out for each other. I'm certain that my children know they are responsible, as loving family members, for each other. The duty that comes with being part of a family is not a choice to make. Narcissism does not foster happiness.
Furthermore, raising an autistic child, alongside twins, is a monumental feat. Ms. Choi's story is honest and thoughtful. Harshly judging her parenting decisions is repugnant.
14
It's really not about whether siblings should care for one another. I doubt anyone disputes that ideally, they should. What we are really talking about is how does a family reach this ideal state? Can siblings be MADE to care for each other? Should they be guilt tripped into caring for each other? Or is that really something that evolves naturally in a loving family where parents model love and care for all of the children?
6
Exactly! In my experience, we siblings of those with disabilities really don't have a problem with the idea that we will be responsible for them. We love them and are willing to do that. The problem we have is with our parents who want to define exactly how we will do it which usually means that because they made our disabled sibling the center of their lives at any cost, we are required to do so as well. Where there is guilt and shame, there is manipulation and where there is manipulation there is an agenda. I believe that parents would be surprised at the love and care their typical siblings would be willing to provide if they would set aside their agenda and set their typical children free to make their own decisions about how they will look after their disabled sibling rather than playing the "duty" card in order to be in control. In response to J. Brown, you are correct that siblings of the disabled should not be narcissists, but we should also not be slaves.
4
I appreciate the writer’s honesty about her fears and feelings. They are natural and understandable. But I can't get behind her behavior toward her children. As the sibling of an adult who has intellectual disabilities similar to Jeffrey’s, I promise you this: The twins are well aware of their duty to care for their brother. It lurks in the back of their minds at all times. It colors their view of the world. It limits their choices and curtails their dreams. They know. They know. Why remind them of it constantly as a test of their... what? Their loyalty? Why insist on cheerful enthusiasm from them for what is simply a fact of life?
It’s not unusual for a parent to feel resentment toward their non-disabled children who have it so “easy”. I ask the author to please consider that she might be feeling resentment toward her children, and work on it.
You’ve done well by finding a semi-independent living situation for Jeffrey, navigating bureaucracies, and planning financially for the future. The best thing you can do is share with the twins everything they need to know about being responsible for Jeffrey. Make sure things are spelled out in your estate planning. Since you may live another 40 years, you may need to change which twin is the executor and trustee depending on what their life situations are.
The other best thing you can do is see your children as independent people with rich and wonderful lives of their own, without holding that against them.
32
Also: Nick and Grace, please check out the Sibling Support Project and come find us on Sibnet on Facebook. You’ll be among friends.
6
I am the adult sibling of an adult with severe autism and the child of an elderly parent. This article is the best reflection of the sibling experience that I have ever seen. It's all about identity. Who are we? We are the caretakers who take on the responsibility of caring for our disabled siblings and aging parents. We are the accommodators who gracious accept all kinds of bad behavior directed towards us in the name of family. We are surrogates who assume the role of our parents are are expected to do that on their terms (no discussion or negotiation necessary). What this woman does not understand is that she does not have the right to define the identity of her twins. She has worked to "engrave that duty on their hearts." I believe that, as a parent, my job is to get to know my adult children's hearts and to help them to become who they are supposed to be. That may line up with my expectations or it may not. Because I do not own my adult children, I do not get to define them. As a parent, I can request things of my adult children, but because they are free individuals, they have the right to say "no" and, if I am wise, I will respect that rather than trying to shame them in to being someone they are not. In my opinion based on my experience, what siblings in these situations most need is the freedom to love and care for our disabled siblings in accordance to who we are not on the basis of expectations defined by others.
36
I have a different view from the majority here.
1. That family members take care of each other is natural and expected in most societies around the world. This behavior is expected, learned, taught, and encouraged as part of growing up and being a responsible adult. In America, upholding the rights of the individual (to be free to pursue his or her own life-dreams) overrides such considerations. That a legitimate alternative may be one where some of those individual rights are to be set aside in favor of taking care of obligations to family, is considered appalling. This is also learned behavior.
2. It is common to think that our individual life-achievements happen predominantly through individual and intentional effort. However, a little reflection shows that the laws of the cosmos have cooperated heavily in creating the results we call our own. Even my typing this comment is the result of those applicable biological laws of the cosmos that maintain the health of my thumbs and my nervous system. I may think I am “free” but I am never free from applicable laws of the universe both when they aid me (as is the case when I achieve) and when they hinder me (when I have autism).
4. There are cultures in the world that view and experience life in this way, in a very deep sense. That my life should also be about looking after my autistic sibling (besides also pursuing my life goals under prevailing constraints) is not such a horrific thing to be taught.
6
I don't think it's nearly as "either/or" as you have formulated it. Indeed there are cultures that place a greater emphasis on duty to family no matter what. Yet, that doesn't always turn out well; the situatio may be hideously toxic. Conversely, in our own, supposedly terribly individualistic society, the vast majority of people take on and fulfill obligations to family, often at immense personal cost.
11
DW,
You are right. We do see American families taking care of each other, sometimes at high personal cost.
However, the comments on this thread provide ample evidence that it is considered a no-no to teach your children that they should take care of their autistic sibling (for life) even if it involves some (lifelong) personal sacrifice.
Americans are not against personal sacrifice. But there is a prevailing common sense that such sacrifice is purely a personal “decision” or a “personal choice.”
In my earlier comment, I was trying to draw attention to the fact that such “personal choices,” that we are so fond of owning as “our own,” are in fact learned behavior and must obey the applicable cosmic laws. What we “choose” falls inside the cone of what we learn and what we are taught. For instance, I cannot choose to write the next three sentences in Swahili simply because I have not learned or been taught Swahili.
Similarly, I probably won’t choose to make personal sacrifices to take care of an autistic sibling if I have not been taught that by my parents or teachers or whatever learning environment I grew up in.
Comments here have uniformly criticized the author for teaching her twins that they should take care of their autistic sibling. Of course, this is a big deal, serious and burdensome. One can “choose” to take on this “duty” or not depending on what one has learned growing up. Such choices are learned. Why shouldn’t a parent teach it to her children?
6
All reasonable points - and my point is that the "duty" approach doesn't necessarily mean better care. In "duty" cultures, caregivers may still be bitter, resulting in cruel treatment or abuse. It's a question of how best to help a family stick together and help each other without making anyone (or everyone) miserable. I'm not sure romanticizing non-western cultures that emphasize duty and family above all else is helpful. Something isn't "better" because no one questions it.
My beloved brother, now 56, has Down’s syndrome. I am 60; he is the sixth of eighth children born to our parents.
When our mother became ill with terminal cancer eleven years ago, my elder sister, who had promised my mother to take care of my brother, reneged. She told us she had her own children and her own problems. It was a nightmare for my mother, who thought everything had been sorted. Was angry.
Thankfully, my youngest brother and sister in law, who lived close to my mother and special brother, volunteered to help. I will forever be in their debt. They moved into her home following her death, and have cared for my special brother while raising their own two sons. I have no doubt that they have made sacrifices to benefit my brother and I have no doubt that my nephews have learned the meaning of love.
My sister? The one who bailed out? I still love and respect her. She was right about her limitations.
No sibling should be expected to care for another. Those who choose to are angels.
50
I have a younger sister with severe cognitive and physical impairments. When we were children, my parents endeavored that she be a member of our family, but not its sole focus: a corner of the square, rather than the center of a circle. It seems that this was a lesson lost on the author, and, sadly, because of that, her twins appear to have been made peripheral. She views their lives in terms of her autistic son.
My sister, now an adult, lives in a group home. Previously, she attended a residential school. I have a close relationship with her and speak to and see her frequently. My parents have given her the gift of an independent life, and in doing so gave me one too.
47
I grew up in a similar situation. It cascades - growing up in a home where I was fearful and not protected didn't fully hit home when I had kids of my own.
Everything with the twins may look fine from your perspective. But trust me - the scars are there.
Instead of calling out the twins in the NYT, how about focusing on the damage your parenting choices inflicted on them instead?
51
Until you become a parent yourself, you will not know how hard it is to raise children. Add to that a child with autism and the diffuculty level goes up n-th fold. So please be compassionate to your parents.
My brother the youngest became my mothers sole focus when he was diagnosed eons ago.I was always told to be more mature,to work harder and be a role model.Fortunately I had a good relationship with my brother for many years until I graduated and went to college.Sadly as years progressed I witnessed the difficulties and distress in my parents relationshipI asked questions regarding planning and the future but was told it was none of my business.Finally five years ago after 10 years of begging my parents to update their wills, POA's, HCP's they did and added me as a full co-guardian,I was taken back to find that they had decided my brother would live with me after their death. Fast forward-my/our dad has passed,mom has dementia and I had to move fast to get things in place, so much to learn, so little time, so very hard in so very many ways.He is now happy, healthy and really enjoying his life for the first time.
The advice of this aging sister is-talk,talk openly,talk about your fears,talk about your wishes,ask about your children,what are their plans, what are their hopes,what are their dreams, what is their picture of the future,how would they like to be included-or not.There are many more options and opportunities available now than 50 years ago.Sibs need to be included not directed or made to feel obligated.Many rise to the occasion and have the ability to see thru a different lens what a sib will really benefit from,its difficult but do-able,start talking now and listen.
21
You wrote, in part, "they did and added me as a full co-guardian. I was taken back to find that they had decided my brother would live with me after their death."
How could they do this without your consent? I have been in a guardianship situation, both taking it on for my mother with dementia, and being asked about what I would be willing to take on for my nephew.
In neither case can I be named guardian without my explicit consent. How did your parents manage to do this? Guardianship makes an individual responsible, entirely responsible, for another. That's never supposed to be conferrable involuntarily.
8
I agreed to be a full co-guardian, it was in the early paperwork, old will, old life plan before I was a co-guardian that this appeared and what prompted me to tell them that wasn't going to happen as it would not have been fair to my brother. He had always wanted a place of his own and had been set to go into a supervised apartment 18 years ago but 2 weeks before move in my mother threw a nuclear fit and refused to let him go anywhere........ Dad was unable to budge her and my brother was crushed, I advocated relentlessly for him to no avail. He is now blissfully happy and blossoming!
2
Not all states require the written consent of named guardians, just write in the name and relationship, and voi la. The named person hasn't even been told until the moment of truth dumps it on them. Yes, people do that. Of course you can refuse at that point, but isn't that a real no-win in a hurricane situation?
My grandson, "Mack", is mildly autistic. He does not demonstrate the violent tendencies written about the boy in this article. He has an older sister, "Mary".
Mack's parents are establishing a Special Needs Trust to fund his future care and needs. He's currently mainstreamed in school but it is doubtful that he will ever be fully self sufficient. The parents are also investigating group homes where Mack can live his life in a safe environment. It is possible, but uncertain at this time, whether he will be able to hold and keep a job after he completes high school.
It is uncertain if and how Mary will be involved in Mack's future. She is currently in high school and doing well in her advanced placement courses. She'll be off to college in two years and will likely earn one or more degrees in science or engineering. Her job future could take her anywhere in the country or the world. But the choice of her involvement with Mack will be Mary's decision; her parents do not plan to impose a "lifetime sentence" requiring her to be responsible for Mack forever after.
10
Honestly, I can't even imagine how distressing this article will be to Nick and Grace. Your lack of empathy for them is astounding.
38
I doubt that the content of this article will come as any surprise to Nick and Grace. The narrative makes it pretty clear that we have a huge, and long-in-the-works, attempt to impose duty via guilt.
They're already distressed by that. Seeing it written about is trivial compared to what's been written about, as lived by those siblings.
15
Ah, but to walk in another’s shoes for fifteen minutes...
2
Did it occur to anyone that the author might have shared this article with her children prior to writing or publishing it? Everyone assumes that this will come as a surprise to Nick and Grace, but the author, who seems to be a person of deep sensibility, would probably have discussed this with her children beforehand. I think that any parent would think twice before blindsiding a member of the family and for any of us to assume otherwise is presumptuous.
1
My now 24 year old autistic son has two older sisters. They have, for as long as I can remember, known that they would need to oversee his care after my husband and I passed away. We have made sure that he has a place to live where he is well taken care of, and that his financial support will not be a burden to them. We have worked on the future together, not coercively but cooperatively.
Without independent financial supports, however, taking care of a disabled sibling can be a frightening prospect. Our society has done its best to make sure that disabled adults stay the responsibility of the parents. But parents living forever is not a plan, and surely the children will out live the parents. Either the remaining family steps up or society as a whole must step up. If neither happens, we will be sorrowfully derelict in one of our most sacred duties - taking care of the most vulnerable among us.
15
Nick and Grace need to get involved with The Sibling Support Project (https://www.siblingsupport.org/), offering a wealth of resources for the brothers and sisters of those who have disabilities of all kinds. They will find others who face many of the same challenges, people who can offer recommendations and advice, and - best of all - people who can simply listen and know as only those of us who are in similar situations can.
11
I concede that there is no clear-cut answer as to how a parent might go about balancing the needs of one, disabled child versus another, especially when they are all really young.
But, I think the answer is much clearer when the children are older and the conversation is centred on who will support the disabled child after the parents are gone. For me, if my other children are expecting an inheritance (e.g., considerations, or perks arising from familial relationships), they are also on the hook for any responsibility arising for the same, or similar reasons.
6
Thank heaven I'm not your child. A parent who offers contingent love, support, and affection and threatens withdrawal of same if a sibling is not willing to assume full responsibility for another is not a good parent, to either child.
17
Who said anything about love, support or affection?
I believe that you, along with several other people, have missed the point that I was trying to make, so I’ll try and clarify: in my mind, you can’t just benefit from being a part of a family, you also have to contribute, especially as an adult.
2
Yet you define contribution as solely your terms, they have no say.
1
Stop with the "the twins" meme already. They are two individuals. Each will soon will be leading his/her completely separate life pursuing career fulfillment, marriage, children, and all the responsibilities that go with adult life, possibly someplace far far away. I know you need peace of mind and your son needs a peaceful healthy environment. Fortunately such homes and programs do exist and you need to come to terms with that as a solution. Hopefully both his siblings will be supporting players in the years to come but you should neither expect it, command it, or demand it.
22
You raise a good point. What if they move away?
7
A close friend of mine -- I'll call her Ann -- had a schizophrenic brother, "Jack," who was 15 years her senior. She also had an older sister. The older sister fled the family as soon as possible. My friend's mother guilted and "seduced" my friend into living at home for the rest of my friend's life to care for her brother. The seduction, so to speak, was done by the mother outfitting an entire second floor of the house for my friend, and by waiting on Ann and supporting her emotionally in every way, while always saying that Ann must take care of Jack for the rest of his life. After their mom died and left the house to Ann, Ann did just that. Ann was a smart lady with a Ph.D., but she taught an ill-paid job at a parochial school near her and Jack's home. But she always said her only hope in life was to live until her older brother died ("no longer needs me"). Ann died a year after Jack's death; I gave the eulogies at both funerals. I knew Ann before and after her mom's death, and I bitterly resented her mom for placing such an intolerable emotional burden on my bright, talented friend. But looking back, I am forced to ask what choice their mom had? The idea of trust funds and guardianships for this family, which lived entirely on SS and Ann's earnings, would be a bitter joke. Jack, left to himself, would have lived a nasty, brutish, and short life on the streets. So maybe sacrificing one child's life for the other's is the only way to go.
10
The more I thought about this column and the more I read the top comments, I think that the author intends this as an object lesson. That is, do NOT make or expect your children to be the caretakers of a disabled sibling.
14
Go apologize to your twins. If you don't understand why this is absolutely necessary, I don't know what else to say.
25
Are you asking too much of the twins? Absolutely. I was in my early 20’s, when I was dating a great guy in his early 30’s. This was in 1992. He had an older brother with OCD, although I’m sure that the brother had other issues that were not mentioned. When this great guy starting talking about marriage, he told me that he expected me to care for his brother full time! I told him that was a ridiculous request, and that the brother would need to be put in a place where he could get the proper care. He yelled and screamed at me. Feeling confused, I then told my friends and family, and they said that his request was completely unreasonable. He is now divorced, his parents are deceased, and he has the brother living with him. I am not sure who is caring for him now. But I can tell you that I am happy with my decision.
27
The comments to this article are crazy. The lack of compassion and understanding is stunning. If something ever happened to my sister where she became disabled, physically or mentally, I would be there for her because that is what families do. Families take care of each other.
17
As someone who IS in the position of caring for a severely disabled sibling— as, I can tell, are many of the commenters here— it is compassion and understanding for Nick and Grace, for their childhoods and the impending work of their adulthood, that shapes many of these comments. Families take care of each other, but if you’ve never had a disabled sibling or child to take care of, it’s hard to grasp the enormity of the task, the way it can completely eradicate any other sense of identity, and the lingering difficulties that can come from growing up as the “other” child... the one who wasn’t “special,” and was a constant afterthought. Are Nick and Grace not also entitled to become their own people in addition to their commitment to their family?
26
Yes, they will have to figure out how to do both, as it appears many of the people, including yourself, have shared that they have done.
2
Easy to say...hard to do. Unless you have been raised in a home that was unsafe due to a sibling, it's impossible to truly understand
16
"Are we asking too much of the twins? What is the responsibility of a sibling for a sibling? When we are both gone, the burden ... Nick and Grace will be forced to take up where we left off."
Asking too much? Maybe.
Responsibility of sibling? Depends.
Forced to take up where you left off? Absolutely not.
Any participation in the care of their brother will start where their relationship with him stands, not where yours left off.
Hopefully you will write a follow-up essay after seeing the responses to this one. Before then, though, you might want to sit down with Nick and Grace and ask them what their experiences were with their brother. Do they remember any joyful times with Jeffrey or with you? What exactly was their relationship with Jeffrey?
Ask them directly, and without using ambiguous words, did Jeffrey ever beat, rape or molest either of them. After all, you did not know that he was capable of unknowingly killing your small baby until you saw him with his hands on her face trying to make her be quiet; you didn't see him rubbing up against girls until Grace complained about overly long hugs (example of ambiguous words). What else did you not see? Or did not want to see?
Detached kindness might be the result of not being able to connect with Jeffrey on an emotional level. Or perhaps they are hiding the truth from you because that's what they've always done to protect you. It's about time you find out.
31
"When the twins started crawling, Jeffrey kicked them if they got too close to his toys...". "he started referring to Nick as a “sad, strange little man.” "an embarrassment who shouted inappropriate comments during school performances" Their childhood was irreparably damaged by this individual. Would you ask the prisoners at Gitmo to be responsible for their guards?
So, it boggles the mind when followed by "We have always believed that Nick and Grace should take responsibility for their brother when we no longer can." No, the only one responsible for your child is you.
36
But the question remains - after the parents die, who takes care of Jeffrey?
2
To me, it wasn't so much the "sad, strange little man" comment (Jeffrey probably heard this phrase on TV or something and just repeated it for effect), but the fact that the parents LAUGHED at this - and even now bring it up as a nostalgic moment. That left me aghast at their lack of empathy for their son (Nick, I mean). He too probably understood that his brother was just parroting something he heard - but his parents then laughing? That must have cut like a knife.
27
That struck me the same way it struck you - it's not uncommon for people with autism to repeat a line they hear in a movie or on TV, and even as a young child Nick may have understood that this was simply the way his brother communicated, but for his parents to have found it amusing is pretty appalling. The only really good parental response to such a situation is to talk to the younger (or targeted) child, make sure he (or she) understands what's happening, that it's not funny but maybe something he (or she) might have to tolerate, and hey, let's go find the biggest chocolate milkshake in town and have ourselves a treat.
4
There is no blessing in having a child with autism. You can not curse the life of other children with the responsibility of the one. They have their own lives to lead. There is no good solution, but the group home for those with autism, seems the best. Siblings then do not bear the cross, and parents might have a life back. As an aside, one can only wonder why this grotesque condition infects mankind. What is wrong with a human that they are so compromised? And, why is it the medicine can do nothing? Yet, it seems more and more children are diagnosed with autism. And, it seems that boys are four times as likely to have it as girls. There are so many questions and no answers at all. It is impossible to avoid utter depression.
13
When I read the phrase "old enough to defend themselves", I almost passed out with anger.
Defend themselves. In their own home. From their BROTHER?!?
You are absolutely and utterly failing in your responsibilities to your two younger children in your drive to care for your older one. Then you dare to assume that they will soldier on in your care quest when you depart?
Read these comments. Five times. Then beg your twins for their forgiveness and set up a special needs trust for your older son. Set up everything before it is too late so that they will be able to live their lives as they see fit.
I wish my parents had done so for my sister. I have her as my charge for the rest of our lives. I was never asked.
49
I’m sorry. Parents, the world over, do the best we can. Life is a messy business. Thank you.
1
The author needs to talk to the adult siblings of autistic people to find out what their experience is. The first time I heard of autism was as a kid when I leafed through a book in the checkout counter. It was "A Child Called Noah," by Josh Greenfeld, who I just learned died earlier this month. There were two more books, and Greenfeld's other son, Karl Taro Greenfeld, wrote a book about his experience.
https://en.wikipedia.org/wiki/Josh_Greenfeld
https://en.wikipedia.org/wiki/Karl_Taro_Greenfeld
https://www.youtube.com/watch?time_continue=3&v=2Lff0-K8hwE
3
Yes.
You are asking too much of your twins.
23
Given the almost unbelievable tone-deafness of her article, is it possible that this is an exercise in fiction from a freelance writer?
19
I want to thank Ms Choi for sharing her struggle. After reading it, along with the comments with positions I never even considered, I had some good moments of reflection. This (mostly) polite and thoughtful discourse is why I remain a reader.
5
My sister’s youngest son is extremely developmentally challenged, although it wasn’t clear what his limits would be until he entered his teens. It was around this time that I got a call from her because he had hit her and she realized that keeping him with her could potentially jeopardize them both—she could easily be overpowered by him and injured or knocked unconscious, and he was (and still is) unable to communicate clearly enough for anyone who did not spend a great deal of time with him to understand what he was trying to say. I talked with her about how moving him to a group home was going to be a good thing for them both since Matthew thrives in highly structured environments, and Theresa’s life was as regular as she could make it, but things did sometimes come up. She cried and worried about being a bad mother, but I pointed out that this move would likely improve both of their lives, and nobody who actually knew her would even momentarily entertain the notion that she didn’t have Matthew’s mental and emotional welfare at heart.
As everyone who knows Matthew predicted, after many months of adjusting to this new life in a group home for boys with developmental issues, Matthew was doing very well—he had friends and structure and knew when he would see his mother and what to expect.
No one who has not lived with a developmentally or emotionally impaired child can know what informs the parents’ decisions and needs to withhold judgment.
29
Amen.
1
It upsets me to see so many comments criticizing Ms. Choi. We do not know the ins and outs of their household. Living with someone with disabilities is hard, so Nick and Grace's current distance is not surprising. But I doubt they lived in a home where they and their needs were neglected. Ms. Choi is not selfish to expect her children to be there for Jeffery. It is critical to see the reality of the situation. The parents' finanical and institutional support allows the twins to be Jeffery's friends who check in, not just a keeper. As an older sister to an 18-year-old with learning disabilities, I think about the future quite often. I know I'm responsible for Joe after our parents die. But my parents never expected this of me; it's simply a part of life. Siblings look out for each other out of love and respect. My brother and I, however, have always been close. Our parents fostered a "s/he's the only friend you've got for life" attitude within us and, even at the end of the most tiring days, I live by this attitude. What concerns me in this situation is the temporary absence of companionship between these siblings: now, in their early 20s, the twins "rarely ask after their brother, but when we all get together for holidays, they treat Jeffrey with detached kindness rather than the resentment of the past." Oy. I hope that Ms. Choi, her partner, and her children communicate about the future, one governed by love and respect between all three siblings.
13
"Ms. Choi is not selfish to expect her children to be there for Jeffery"
Um, given that she and her husband "have worked to engrave that duty on their hearts", I'd say it's pretty much the definition of selfish.
28
It's the definition of blindly selfish. It's a kind of narcissism by proxy, and one I doubt that Jeffrey would want to know has been conjured in his name.
4
What? Where did you read Ms. Choi say that she wants the twins to take over so that she and her husband are free to travel the world and live it up?!? All she hopes is that they will take over the parents' role as best they can ONCE THE PARENTS ARE GONE. That's all.
2
I think some of the negativity about the parents making a bad decision about assigning care of the brother to the twins is not appropriate as the writer has given only a snapshot of the problems families with children of special health care needs face.
I do agree that the adult twins need to be incorporated into the discussion of the care of the brother as an “opt in” caretaker (ie, the adult children’s interest must be the priority). If they have any interest, they should really be in the loop of what is going on now. If they do not have any interest, then they should not be part of the future planning and plans should be made for a trust with a separate assigned guardian. Or something in between. Also that this decision is a continuous conversation over time.
I think the key is that the adult children should be part of the conversation with the explicit acknowledgement that their childhood was difficult, which they handled (seemingly) in a gracious way. Anyone who is judgmental about this family’s lack of communication should answer these questions—Do you have a health care proxy? A will? Decisions made about end of life care? Probably not. Why not? Because these conversations are hard. Best to to encourage people to have them. Not judge them for not.
10
Hopefully the twins will resist your attempts and manipulation and find solace in eachother once they are old enough to limit their relationship with you and their abusive brother.
24
Wow.....just...wow. WHY would you even consider that 'the twins' would have such a responsibility? And make that your choice when they were both children!! Maybe 'the twins' should have been in on that decision making. And I'm being sarcastic with the 'maybe'.
Good lord! You set up some sort of legal guardianship for Jeffrey's future, you don't sacrifice your other children's future. It feels like you propagandized their lives away with 'you must' take care of your brother as we, the parents, have done all these years. They're not his parents!
Wow.
29
It isi not the twins' responsibility to care for an autistic sibling. That's YOUR responsibility. YOU are the parents. YOU are responsible for taking care of your children. YOU need to figure out how this adult child will be cared for after you are gone and you need to figure it out NOW.
How incredibly selfish you are to expect your children to fulfill your responsibilities. How incredibly selfish you are to demand that your twins sacrifice their financial stability, their children's education funds, and their retirement funds to care for a sibling and all because you're too selfish to care for your own child.
25
One more example of millions why we should re-open the asylums. Without them hundreds of thousands of people live and die on the streets, which is unbecoming a great nation.
6
I think you are unaware of the horrific abuses that occurred in asylums behind closed doors. Society should embrace difference and not warehouse who are different - the elderly, the handicapped, the mentally ill. My daughter who is developmentally delayed (age 25, cognitive age 5) is funny and brings great joy to our family and many people. A measure of a civilized society is how it cares for its most vulnerable.
10
I completely agree with your last statement. That being said, part of that would be the creation of publicly funded residential placements for those who cannot take care of themselves that are not what the asylums of yore were.
We are capable of doing so, both financially and logistically, as a society. It is a matter of having the will, particularly the political will, to do so. Given the ubiquity of the, "I got mine, Jack, too bad about you!!," attitude in the zeitgeist it will be a very, very long time in coming.
1
You’re AWESOME!
This is the sort of situation that exposes notions of 'free choice' and meritocracy for the lies and hypocrisy they are; it's clearer here because Nick and Grace (it's far more likely to be Grace than Nick) have known it's coming to them since they were born. But many of us will shoulder the task of caring for an adult--whether a sibling, parent, or spouse--at some unexpected time in our lives, and for 90% of us, we will be unable to pay someone else to do that work while we build or maintain our own careers, never mind our own families, our own goals. Some of us will have grateful family members who acknowledge the work that goes into it; some of us will have the financial wherewithal to be able to view the caregiving as a choice and a privilege; some of us will be isolated and alone, and the caregiving will take an enormous toll on our own health, relationships, career, and finances. Grace and Nick aren't alone in shouldering the burden of caring for an adult family member from a very young age--they're not even rare. What's rare is talking about it, and acknowledging that it's not a choice.
23
As the only reasonably stable careered adult of three children (I'm the middle), with two mentally unstable siblings, and emotionally absentee parents I must say I'm totally grossed out by this parent's POV. After escaping the cauldron of misery that was my childhoods with these insane siblings I cannot imagine ever taking responsibility for them. Help when I'm able? Of course. Do what I can? Obviously. Be responsible for their welfare? At the expense of my and my own family's well-being? Absolutely not. If my parents burdened me with that guilt, it'd just be added to the pile of reasons we no longer speak.
For some people, surviving and escaping is the only option. I feel for these twins. Hope they make the best decisions that work for THEM - not the parents or Jeffrey.
38
I feel your pain. I’m a parent of an adopted boy who won the lottery of special needs. Everyone is hurting in my house and there is not enough mom in me or dad in my husband to supply the endless need. All I can do is do the next minute. Maybe your family was also so overwhelmed.
1
Are we asking too much of the twins?
Sadly yes.
23
If county social workers were ever aware that you were allowing your oldest to violently interact with your youngsters until "they were big enough to defend themselves", they would have acted to remove them from your custody for their own safety.
28
Perhaps it would have been better, instead of guilt tripping the twins, if the parents had simply raised their children to be responsible and compassionate people who, when the time comes, would recognize their mutual responsibilities to each other on their own. This article reads like a type of bullying. The twins may or may not be living up to their parents' expectations, but to try and shame them into compliance in the NYTimes seems beyond extreme. I know if anyone did this to me my reaction would be the exact opposite of what they hoped for.
21
It strikes me that the author never says that she and her husband have *asked* their twins—only that they expect this of them. Maybe some real conversations would be a better starting point than recurring reminders of the twins’ “duty.”
19
This piece was not written for your judgment or approval, and those of you who castigate the writer speak volumes yourselves and your apparent ignorance of what it means to be a family. All families deal with he surprises and challenges of unanticipated illness and disability, be it addiction, mental illness, cancer or countless other things. People’s lives are upended by war and natural disaster, too, and yet in the cases of disabled children there is still the judgment that comes from that situation being billed as a direct punishment from God that parents must bear and plan for alone. You don’t get extra credit for your typical kids and you don’t get blame for your disabled ones, but you do your best to support each other in whatever way you can. Communication is key, empathy is learned (sometimes) and planning is essential. People with autism commonly crave routine and familiarity, so creating a living space and community that will continue beyond parental lifetimes is a Herculean challenge. The world is changing so fast, it is hard to know what will be available in five years, let alone fifteen or twenty. Families - including siblings - need to learn how to address and solve problems with regard to their disabled family members because those are the skills they will need in all areas of their lives, and navigating the bureaucracy is at the top of that list. If we give siblings those tools, and do it with love and compassion, they can do whatever needs to be done.
10
"This piece was not written for your judgment or approval"
Any essay published in major newspaper (or on Facebook or on a blog, etc.) is subject to the judgment of all its readers. If the writer doesn't understand that reactions will run the gamut from approval to sympathy to outrage, then publishing or posting on the Internet is simply not for that person. Also, ending with what the writer may have intended as a rhetorical question is almost certain to be answered by readers; that, too, should be understood before presenting your personal life (and that of your spouse and children) for public consumption.
25
I read what other people write to learn and understand, and as a writer, I write to share, explain, and glean knowledge in that process. It is absolutely true that when writing a public piece about one’s private life, people will feel free to comment and some will judge, but those who judge often miss the point, in my experience. If everyone wrote and published so that others would judge them, we would be much poorer indeed because little good comes of that. Many commenters here have provided good advice and shared experiences that may help the writer, and those that tell her what she did wrong and why she is bad do nothing to help this family move forward. The definition of what it means to care for - or about - a sibling with a disability varies for families, just as it does when one has to care for parents. It should also be noted that some people are better equipped for the caring job than others. Finally, the twins in the piece are now 23, which means that they are not fully developmentally developed themselves (science tells us not that age 26 is when all the necessary pieces are in place). Allowing siblings to establish themselves in their own lives will lead to a better conversation about what role they play in their brother’s life. It’s not a yes or no question - it never is. It’s a “how do we do the best we can as a family” question, and it would be great if commenters have some good advice about that.
7
Sorry, but life is not all roses and ice cream--sometimes it's a bitter lemon--if you expect all praise and no negative criticism you are not living in the real world. I feel sorry for anyone who is so naive to think that life is all about "You're a wonderful, perfect person." A mature writer (or mature person) should learn that lesson real quick.
1
Setting up a trust is probably a really bad idea. Although the government benefits that Jeffrey became eligible for when he reached adulthood were not specified, it sounds like SSI and Medicaid. If Jeffrey were the beneficiary of a trust, he would loose his eligibility for SSI and his medical benefits. The trust would become a cruel trap that would last a lifetime---
1
A good attorney specializing in this type of estate and trust planning can help with that.
11
A special needs trust, which does not pay for items that are covered by SSI and Medicaid, avoids these issues.
9
You have compassion for Jeffrey, but what about some compassion for the twins? Why are their rights to childhood, their rights to attention from their parents, their rights to being themselves denied? You should be more guilty of destroying Grace and Nick's lives. What is their fault? Being normal? It is totally unfair to pass on your guilt about Jeffrey's needs above all else to the twins, forever into the future. The twins's childhood has already been robbed but do you as parents destroy their adult lives too? They have a right to normal lives. (if they have one! ) Jeffrey cannot be the center as it was for you.I sympathize with you about Jeffrey but I sympathize with Nick and Grace even more. They should not be their brother's keeper and you have no right as parents to expect your normal kids' to do so. And what if Jeffrey outlives Nick and Grace? Do you expect your grandchildren to take care of their uncle too?
23
sadly, we have let our own government dictate care of the disabled, limiting financial support for parents and child as well as nonexistant therapy and rehab therapies. We the people should be ashamed that we still ostracize and promote the hiding and seperation of those whom have neurological and physical disabilities and still think Medicaid is a program taken advantage of by the POOR. The word poor, doesn't mean in spirit, it is our own capitalism society deeming that some deserve less than others, and those with less only deserve to be mentioned in Church or labeled by Republicans as "those animals". Medicare For ALL..no more profit making pharms or insurance companies let loose on those who ill can afford a disabled child without the support of the medical and public community.
4
Wow! What a sad story. My answer to your question if you are asking too much of your two normal children is, yes. They should not be burdened with the care of their brother. What about the time when they marry and have children of their own? They have already suffered enough growing up with him.
22
What bothers me most about the column is the mother's attitude toward the twins. After acknowledging that Jeffrey was allowed to terrorize the twins as children, the mother now worries that the twins have not grown up to be compassionate people because -- why? The 20-something twins' ability to treat Jeffrey with "detached kindness" -- at their age and not so far removed from an abusive relationship with him -- seems like a lot. But the mother wants more and presses for assurance they will accept this future undefined responsibility, while not accepting the assurances they do provide. Setting aside plans for Jeffrey's financial future, this mother needs to stop treating the twins as if they have no significance except as either victims of or supports for Jeffrey. She lucky she still has a relationship with them and she is pushing her luck.
27
You can't control what happens after you're gone. While you're children are not all equal, arrangements can be made for your autistic son. Do not put that burden on your other children. That is not only unfair there is no guarantee they will honor your wishes through no ill will on their part. While I understand parental concerns, there are three children, not one.
11
Consider even in milder circumstances many adult siblings don’t have a relationship for whatever reason. Why force it? Resentment all around.
7
Everything about this story points to the necessity of a strong social safety net. ANY family can end up with a member who requires special care, supervision or support whether as a result of neurological disorder like autism, physical disabilities and challenges, mental illness or other chronic illness or disease.
Is this family asking something unreasonable of their other children to bear the future responsibility for a disabled sibling? YES. It is unreasonable as they may not WANT to step in and who’s to say they will even be in a position to be ABLE to? What if one of them has their own disabled child they needs their support or attention or simply insufficient personal resources to help even if they wanted to? Or, or, or... Yet, under the current circumstances in our society what choice do the parents have but to ask their other children to step in? This young man is already receiving the full extent of the public services available to him (which by all accounts is more than he would receive in many other states) and he still requires financial support. There is nothing about that, that makes any ethical sense. Government is there to help society accomplish things together that we cannot accomplish alone and until we develop the empathy as a society to recognize that this could be any of us and vote and pay taxes accordingly, any of us could find ourselves in one of the roles of this family: unreasonably expecting parent, put upon sibling or vulnerable member.
12
I am the older sibling of an autistic adult. My brother is now 40 years old. My parents also wanted my sibling and I to take care of our younger half brother once they were out of the picture. What they didn't consider is our careers, our spouses and young children. What we wanted them to consider and explore was the other resources available to them. After my stepfather died and my mother found it difficult to cope, I suggested she take a break and return to family in Italy. My mother has been there every since. My mother, an Italian citizen, was able to find a private school for my brother and it has improved their lives greatly. The school (http://www.oikosunacasapervivere.it/) offers adult daycare, vacation care, and long term care. A couple of times a year the entire school goes on a week long trip so families get a well deserved break. There are also free public school programs available for families that include bus transportation. The other advantage of living in Europe is the state run healthcare system, ER visits are free, medicines are reduced cost, specialists are out of pocket. You can apply for residency after living in Italy one year and later citizenship after two years. The fact my mother was able to tap resources for my brother in her native country was a huge relief to the family. No family member should feel that they are drawing straws for the future care of disabled family members.
16
Well, my aunt never stopped drilling into her younger daughter that she'd be responsible for the elder, born when accurate diagnosing of baffling deficits and symptoms wasn't available, and guess how much love and affection that engendered.
The elder girl married a guy with similar but then-unnamed deficits, and their lives together were a disaster, and she's now a widow living God knows where. She's just sharp and verbally sophisticated enough to simulate "normalcy" enough to never having been officially declared someone needing oversight.
How might things have been if my aunt hadn't created terrible resentment from very early on?
8
I didn't have a mentally disabled sibling but had two siblings with serious physical disabilities. The older one resented me, and bullied me for years, because I came along after, blessed with good health and a happy nature. The younger one both depended on me, as our overwhelmed mother managed the needs of the oldest and neglected the youngest, but also resented me and saw me as a competitive target, always seeking to outdo and undermine me. I was told by all, including the Catholic school we attended, that my normal needs as a child and teenager were secondary to my siblings' needs and my parents' expectations of help. My siblings continued to tell me that, well into adulthood, even after their health issues stabilized, their lives were on track, and I experienced serious medical problems myself.
Our relationships now are much better than they were, but that is mostly due to my wonderfully supportive spouse, the distance I live away from my family, and the passage of time. I also decided many years ago not to hold onto what was a difficult childhood for all of us, but also not to let "survivor's guilt" dictate my own life. I would not and will not take on the support of my siblings; I have my own children who deserve and need that from me.
Our parents unwittingly created these hard dynamics for us to the detriment of all. You should set up a special needs trust for Jeffrey, to receive the proceeds of ample life insurance, with an outside trustee to oversee his care.
18
I wonder if the author has given the twins a chance to really express the difficulties, pain, anger and hurt they experienced in childhood? Perhaps so, but if not before demanding they take responsibility for their brother I suggest she and her husband hear them out. I grew up with an elder sibling on the spectrum who became violent at times. It is a real challenge being the younger one. And terrifying at times. As an adult my parents are grateful for the times the siblings are able to have a good relationship and respectful of the space needed when it is not. I wonder how many of the people insisting the twins take responsibility for their elder sibling had a childhood remotely similar to theirs?
33
I felt uncomfortable when I read this piece because of the author's attitude about the twins' responsibility for their brother. Because we live in a country that provides very little for people like Jeff or his family, who else can one turn to? What do poor people with a disabled child do? Maybe we should be getting angry that we live in a society that does not take care of those who need help rather than at the author.
37
we have decided as a society (quite recently) that all people deserve the chance to live as full and happy a life as possible. This means we include severely handicapped people in our lives, in school, in work and in non-institutional settings. It also means that everyone else is impacted. For good and ill. But the burden can't just rest on the relatives because it is too much for one person or family to support emotionally or financially. Since we collectively made this societal change, we collectively need to help.
25
Consider arranging for trustee to care for your son when you no longer can. Putting this responsibility onto your other children when they don’t want it is not good idea and they’ve gotten the message their entire lives that their needs take a back seat to the special needs child. Let go of the idea that the siblings need to do this and let them have their own lives for once.
45
A special needs trust.
2
I have attended many lectures about autism. At one of the most profound lectures I attended, the lecturer started out with "what happens if you are killed in an accident on the way home". Amongst all the things discussed, passing the responsibility for the care of an autistic child to siblings was not even on the radar. As others have stated, (and the lecturer stated) set up a trust, and leave the responsibility to an outsider. Your twins deserve to live their own lives, free of decisions (in which they had no involvement) you made concerning their sibling.
I may seem unsympathetic, but it seems to me your twins were left mostly to fend for themselves growing up. Yes, Jeffery had special needs, but so did Nick and Grace.
Nick and Grace were burdened at a very young age with their brother's care, because his needs superseded theirs. As adults they should be free of that burden. Why exactly is it their responsibility to sacrifice their lives for his?
Jeffrey is living his life the best he can manage, and is in a safe environment. His needs are being met. It is your responsibility to see that continues for the rest of his life, not Nick and Grace's.
61
Life is about choices. You have chosen to burden your twins with a sense of guilt if they don't step up and care for their brother, regardless of whether they are able or not. Your actions are no different from those of a parent who expects his child to grow up to be a doctor or a star athlete. Grown children resent the expectations that were thrust upon them when they were children. When you are gone, the twins may choose to institutionalize their brother and give away the silverware. Taking on the burden of caring for someone with a mental or physical disability or illness must be done freely and willingly. Free your twins from your expectations. Now. Let them choose to care for Jeffrey out of love, not obligation.
44
comparing these 2 thoughts expressed in the comments:
1. the twins did not choose to have and care for an autistic brother
2. "Government benefits are a land mine and there needs to professional advice."
did tax payers choose to have an autistic citizen and care for him/her?
do we really get to choose our burdens and discard the rest for someone else to bear?
if we cannot expect the siblings to care for their brother with special needs, then how can we compel complete strangers to care?
6
Actually, yes, as taxpayers, we support and provide for the general welfare of all our citizens, even the Jeffrys, so I'm happy to make the government benefits a streamlined, efficient process instead of throwing disabled people to the whims of relatives, if any there are. That's called a civilized society.
35
Your preferred world is apparently one that is all about ME and everyone else can fend for themselves. An ugly, brutal place. Like it or not, we all share responsibility for each other in one way or another. And, just for the record, let's be clear - NOBODY chooses to have an autistic child.
4
Many commenters here have condemned those critical of the parents for looking to the twins to care for their brother. But, remember that the writer admitted that those "typical" kids were not always physically safe in their own home, and on occasion neither were their friends. This doesn't even count the times they may have felt emotionally or physically unsafe. This, despite parents who obviously loved them all very much. That is what affected me most reading this.
34
I am struck and saddened by the underlying assumptions of this piece that Jeffrey is necessarily and only a burden. I don't have an autistic child, so I don't know firsthand what the experience is like and I'm sure it can be very difficult, but I wonder how this family dynamic might have played out if Jeffrey were viewed and treated merely as different: challenging, difficult, maybe even dangerous, but also quirky, interesting, someone whose worldview might even be instructive. The memoir Strange Beauty by my friend Eliza Factor about raising her profoundly disabled (and sometimes very violent) son Felix shows that this is possible. Knowing that family or even just reading the book, it's hard to imagine Felix's siblings not wanting to care of him because they so clearly love him and accept him for who he is.
4
The mother admits he was abusive to his siblings.
39
He IS a burden on the family, harsh as it may sound. And one day, the twins will have to step up in some way that they never chose.
11
"I don't have an autistic child"
After typing this, I would have deleted the comment.
14
It's easy to pile on against the mother here for imposing "duties" on her twins, but it's a lot harder to provide concrete suggestions about what else she can do to ensure that her disabled son continues to be adequately cared for after her death. How can we as a society better support people with disabilities so that their families aren't thrust alone into these impossible, "Sophie's Choice" situations in the first place?
19
And a very great many of those offering comments here include excellent advice in precisely the options that exist, and should be exercised. If you're not noticing that you're doing a very selective reading.
6
You can ask the twins but you can't expect or force them to look after their brother. Only if it's by choice.
Someone close to me is in a similar situation. They ignore their sibling and have nothing except resentment for the burden placed upon the family. It's not a choice, that's how they feel.
23
I feel sorry for the twins.
They are young now, and so, relatively, are the parents. They have many years ahead for other difficult obligations to develop. What if the twins, their spouses, or their own children develop conditions that require long-term care and financial support? Are they supposed to put their brother first? What if these parents live long, but not healthy lives? If everybody is filthy rich, fine. What if they are not?
This is why we turn to the larger society - in the form of government - for support. Most families cannot manage the life-long care of someone like this older brother. Neither can the government, of course, if people are not willing to pay the necessary taxes.
24
Having family members and friends who had or have kids and adults who fall along multiple spots along the autism spectrum
I have learned that autism has many faces and manifestations. Ignoring that individual diverse reality is not fair. Being a fair and good parent to kids with and without autism is just as diverse and individual and a difficult choice.
4
You have BOTH blighted the lives of your twins. STOP. Use some common sense, start making arrangements for your Son, now. Do not place this burden on his siblings. They have been through enough, to expect them to further sacrifice their lives is cruel and ridiculous. He is NOT their responsibility.
102
Phyliss - so judgey and strident. So certain of the burden placed on the twins. Such empathy on what they have been put through. Have you considered that one day the twins might disagree with you and embrace the challenges of caring for a brother who through no fault of his own is unable to care for himself? The twins are still young. They can’t see anything beyond their own needs. Give them time. There are no other great options. Life is messy.
7
Phyllis is just being more honest than the others who can be sympathetic from a distance. If the twins change, great. If not, I wouldn't blame them. It is up to the parents to make the arrangements, not depend on other children to take up the burden. And yes it is a burden of love. A family friend is in a similar situation and the son's condition is more manageable than the author's but the daughter was forced to give up going to her college of choice to be close to her brother to care for him. While she later transferred, her parents' focus on her brother did cause an undue level of resentment.
2
Everything that can be done for Jeffrey has BEEN done. Making further demands upon your younger children will only alienate even more. Set up a trust for Jeffrey’s benefit, but otherwise back off.
6
Yes, Elizabeth. You are asking too much of your twins. Their brother is not their responsibility.
83
This is the attitude that accounts for so many homeless people who are troubled in one way or another. In the past, Americans cared for their difficult relatives, had them live in their homes when they couldn't care for themselves. Yes, it's hard, but it's family. What do we really have besides family?
4
Governmental program that support those with disabilities? But no, we live in the US, where support systems are rare to non-existent. How uncivilized of us. Other nations have made caring for the disabled part of the social structure, so that everyone gets better care and no one is lost.
1
In the past, we had institutions. Reagan emptied them.
6
I don't have an answer for this. May God be merciful, and may NYT readers realize that most folks have incomes 25% of theirs. Trust fund? Really?
26
Yes, really. Since the author makes direct reference to proceeds from life insurance, and seems to be responsible enough that savings of other sorts have been and continue to be made, the responsible thing is to set up a trust. You don't have to be obscenely wealthy to have and appropriately use a trust for situations just such as this one.
33
In this case of course. In 90% of families -- and the article is interesting when we imagine ourselves as the people who are participating in this real-life difficulty -- not so of course.
9
There was a recent story aired on NPR that featured a financial planner with something like 9 rules for financial success. Number 9 was, by his own admission, not of the same nature as the prior 8, which were personally focused. That rule was, "Do whatever you can to support and to reinforce the social safety net."
He made the point that within his own family one of his siblings was significantly disabled, and even with all the careful planning his parents did do that they would have been absolutely crushed financially, and ruined, had the entire obligation for that sibling's care fallen on them. The amount of "plus" that they were able to put in to society and into paying taxes would have been entirely lost otherwise.
It really only makes sense, in an industrialized western society, that we "have each other's backs" through public sector safety net programs for situations such as this. The sad thing is that recognition of this fact keeps getting less and less, particularly over the last 45 years or so.
8
(1) We have always believed that Nick & Grace should take responsibility for their brother when we no longer can
Why? Because they had the bad luck to be born into a family
*with an impaired sibling who was allowed to remain in the home & terrorize & humiliate them
* with parents who demand they sacrifice their time, their money & the lives of their spouses & kids to caring for the impaired sibling?
You aren't just demanding that they care for their brother. You are demanding that their spouses & their future children sacrifice as well.
(2) they accept it grudgingly - treat Jeffrey with detached kindness - they say they will handle it, & anyway, it is far in the future.
They are telling you what you want to hear in order to stop your relentless pressure & demands
When you are dead, they will walk away from it. Saw it happen in my family.
(3) we still pay several hundred dollars each month to cover {the costs of Jeffrey's care} Dan & I set aside as much money as we can for his future while saving for our own retirement, but it is likely that Nick & Grace will need to carefully ration our life insurance payout to keep their brother clothed, fed & supervised.
Translation - the money WILL run out long before Jeffrey is dead. If Jeffrey outlives the parents by 29 years, it would take -assuming $900/month - $313200 to get him to age 80 In TODAY'S dollars. Now allowing for the historical rate of inflation, it will actually take $2,539,514 in tomorrow's dollars.
61
Did you ask your children--all three of them--whether they consented to this column and your sharing of these most intimate details? If you did not, this is a betrayal of their privacy.
81
You are making the presumption that pseudonyms are not being used. For articles such as this one that is a reasonably common practice and one that protects the privacy of all involved while allowing for the presentation of the author's "unvarnished" perspective.
I agree, however, that if this is not the case that consent of those written about should be obtained.
2
I had the same thought. Also, its like the twins will have the responsibility publicly assigned to them.
8
They have the responsibility publicly assigned to them by the author, Mom.
The majority of respondents in these comments indicate just how wrong Mom is to even attempt to assign that responsibility. That should give any child in the same position as either of the twins some comfort at least, and some ammunition for push-back, too.
3
Having an autistic child is a terrible burden for every family member, but castigating this couple for not institutionalizing their son shows breathtaking ignorance. Unless you are very rich, such institutions are bleak places and hard to come by. My autistic nephew, now in his twenties, qualifies for assisted living during the week, but comes home at the weekend. And that's in a state with relatively good services. His care will fall on his sister, although the extended family will help as they can. Her childhood was blighted, but she loves him and is deeply attached to him. If it were me, the oldest of four who resented the birth of each of my siblings, I'd have fled the country on adulthood. If family members have no obligation to one another, we need to put in place better governmental supports.
28
I can barely put into words how much I wish somebody had told the author a long, long time ago that autism does not mean that a person can't learn things like personal boundaries, to respect the rights of others, or self-advocacy skills, and that those are things that need to be instilled by parents starting at a young age. They may have to be taught differently, but nothing about a child being autistic exempts parents from the responsibility of teaching them. At this point I don't particularly blame the siblings for not wanting responsibility for the care of their brother. The tragedy is that nothing about this story had to be this way.
39
It sounds that this family was not offered much in the way of therapy, that families are offered today, in order to ameliorate what their son was going through. It is A LOT to ask of parents to intervene in ways that now-a-days is assigned to trained behavioral therapists.
14
Did we read the same story?: "The tragedy is that nothing about this story had to be this way . . . autism does not mean that a person can't learn things like personal boundaries."
Compared to . . your experience, Emily B.? You are painting a picture, yes, but with a roller, a steam roller, not a delicately nuanced brush.
2
People with autism have different degrees of ability. What one person is able to do, another is not.
2
These parents have been doing their best for a long time. Their children, all three, will continue to do so as they strike out on their own. With a little luck everyone’s health will make some room for each child to reach a full adult capacity and explore their feelings as adults.
The anger that some commenters have commenters have expressed here is really intense. It reflects the intensity in the points of view in any story like this — why couldn’t I give my children everything I wanted for them, why won’t they be responsible as I am, why couldn’t my home always feel safe, why weren’t my parents paying attention to me, why were my siblings born? We need space for this.
If these parents and their children can, in love, talk openly and without pressure about these feelings, over the many years of young adulthood, it may make it easier to talk about the evolving picture of what they will each need.
30
People choose to have empathy, not told to. If only it were that easy. Of course, then it wouldn’t mean anything either. All you can do is show what it looks like.
12
Are you asking too much of the twins? Yes. You say yourselves that you essentially let their brother's disabilities consistently trump their right to "a safe, normal childhood." How are they supposed to feel about it? They are not "forced to take up where [you] left off." If they do so, it will be because they choose to, and right now, your idea that you can guilt them into it is as misguided as your original total sacrifice of their childhood to their older brother's needs. If I were you, I would figure out a game plan for Jeffrey that does not depend on Nick and Grace.
83
Amen! I really do not understand where the idea comes that everyone in a family with an individual with a significant disability "has a duty" to sacrifice their lives on the altar of that disability. There is a difference between abandoning someone entirely, which I find loathsome and tragic, and expecting that one's lives and the lives of other siblings are somehow to be perpetually wrapped up in constant caregiving. The author makes clear that even they have tried to create as normal a life for themselves, and their son with autism, by finding a residential placement where each lives relatively independently of the other. The next step, if it has not already been taken, should be to set up a trust, with a third-party trustee, not the siblings, for that son's care.
My own sibling has a situation not at all unlike that described by the author, and the main thing they're focused on now is trying to plan for his care such that they can live as normal a life as possible and his sibling will not be saddled with any duty related to her brother that she does not wish to undertake of her own volition.
34
I have a sister who has autistic tendencies and is now in her early ‘60’s. Autism was not a diagnosis in the 1950’s - early sixties so she was always “special”. My parents tried to prepare her for life and provided vocational training. However, she struggled to keep low wage jobs.
My Mom did not want to burden her 3 other children with her care. My Mom passed away 5 months ago without a plan
for her. She wanted sorely to outlive her. While my sister has a place to live, she has no social support system. I have claimed responsibility for her because I could do nothing which is more meaningful in life. I am angry at my Mother for not taking a more active role and discussing with her children what to do when she was no longer around. I praise the author for writing this article and hope it spurs conversation with her twins.
42
You should be angry at your mother as well for indulging in the fantasy of any belief she would outlive her own daughter and, more importantly, "without a plan for her." It was your mother's duty to do that planning, not to deny that it needed to be done.
I agree that she should have discussed with her remaining children about "what the plan is" for after her passing to get a sense regarding what any one or more of them may have been willing to commit to because that was their choice. If that choice was complete "hands-off" in terms on being an active caregiver that's still a legitimate choice, and plans should be made accordingly.
It's also a great disservice not to make some attempt to "launch" a child with autism out of the home into whatever long term living situation that is appropriate long before you as a parent pass away. This allows you to assist them in making the transition rather than having that transition, whatever it is, be dropped on that child like a bomb along with your death.
2
You could have opened the subject with your Mom. Surely, somewhere in your mind you new that this sister would need help . Your Mom would not live forever.
2
I wish it were that simple. My Mother had no confidence that any of her children could step up and she did not want to burden her children with my sister’s care. When the topic was broached, the defenses went up and my Mother refused to discuss. She enlisted my sister to avoid the discussion. The unfairness of course is to my sister who lost her world when my Mother passed. Knowing my Mother was in failing health, in the past few years, I “courted” my sister to be able to be a trusted presence in her life. It is a very delicate dance we are doing now to keep her protected and safe.
1
Are you asking too much of the twins?
Yes.
45
This piece wisely addresses a conflict that no doubt affects families with an autistic child. Namely, who is expected to be responsible when the parents are no longer around. Ms. Choi wisely acknowledges and normalizes and understands the resistance of siblings who have their own lives to live rather than using guilt to force them to pretend they feel otherwise and thus setting up inner hostility and resistance. As a result, as the siblings get older, they most likely will more willingly share tending to their brother. After all seeds of responsibility and compassion have been planted, and an apple usually doesn't fall far from the tree.
15
Seriously? As the twins get older, they have the right to marry and raise their own families, pursue different career paths, and will likely struggle with making enough money to support themselves without the lifelong burden of a disabled brother. How will this make them more willing to do so? Responsibility and compassion are one thing, a forced duty is another, especially in today's world where most families require that both parents work in order to support their own children.
The parents here need to make whatever provisions possible to ensure the care of the disabled son without assuming that their twins will be able to support him. It can then be their choice to step in and help to the best of their ability, or to decide that it is in their own best interests not to do so.
10
LW I regret my comment offended you. Taking it so personally, I'm assuming you had a similar experience. Maybe write an article about it from that perspective; of that kind of expectation being too much. Which many undoubtedly would agree. It would create a huge conflict to be pulled in two different directions, one toward feeling responsible and the other toward meeting one's own needs financially and on every other level. You make a good point that it is up to the parents to set things up so taking on that kind of responsibility isn't left up to siblings.
All human beings have a fundamental right of self-determination. Ms. Choi is violating that right for her twins. Full stop. She should make certain that her husband and she make a bullet proof, funded plan for the caretaking of her autistic son that specifically DOES NOT assume ANYTHING on the part of her other children unless they specifically offer the help. Any other contributions by them, in whatever form, should be considered a bonus.
50
It's called a Supplemental Needs Trust in New York; the parents should have taken care of this as soon as the son became eligible for SSI and Medicaid.
7
Amen, Amen, AMEN!!
4
You have to be responsible for your child's future. You choose to have this child; no one else did. I have a disabled brother that my parents accepted no responsiblity for and it is now my choice is to either care for him or watch him become homeless. People need to think about the long-term ramifications of having children; it doesn't always work out well.
30
No one chooses to have a disabled child and I believe your parents did not set our to become pregnant with a disabled child who became your sibling . Life happens !
So to write as if it was a choice of your parents is really sad . Once they had your sibling and it became obvious that he was disabled , they had no choice but to take care of him to the best of their ability . What other alternatives would you have offered them if they had asked you ? Murder him or her ?
3
"The chief advantage that would result from the establishment of Socialism is, undoubtedly, the fact that Socialism would relieve us from that sordid necessity of living for others which, in the present condition of things, presses so hardly upon almost everybody. In fact, scarcely anyone at all escapes." - Oscar Wilde -
Instead of guilt-tripping your children into a lifetime commitment, why not advocate for a society that takes from the rich and gives to the poor. Your autistic son definitely would be in the latter category, and a lot worse off, if your family did not have resources that others do not.
Do all poor people deserve our support or even respect? No, that's beside the point, in the wealthiest country in the world the shame is not that two siblings most be coerced into caring for an impossibly difficult and unsympathetic brother but that the safety net has holes that convoys of trucks can drive through.
19
My younger brother was a high functioning autistic, what was formerly called Aspergers. However, we grew up in an ultra orthodox Jewish family that refused to acknowledge any form of mental illness, as it was considered a curse from god. Until he was 18, my brother was kept hidden in plain sight, with excuse after excuse for his behavior. It definitely got worse after puberty, because he had no boundaries and got into constant trouble. He was lucky that the sexes were separated, or it might have been worse.
I left this community for the secular world when I rebelled and went to college to study engineering and not the Torah. It was during this time that my eyes were opened to mental illness and autism. In my junior year, after the death of my father, I convinced my mother to let my brother come live with me. I was then able to get him the support and therapy that enabled him to go to school and eventually get a degree in accounting. He flourished for a few years working as an accountant, but soon our mother convinced him to rejoin the orthodox enclave, mainly for his income.
Things went downhill from there, therapy and support stopped, guardrails were removed and he committed sexual crimes. Jump 20 years later and he reentered my life broke, homeless and jobless. As his older brother I felt the obligation again to provide his support and get him reintegrated into society. He is family and I will always be there for him, no matter what.
61
God bless you.
1
You're a mensch. Unlike the millenials we're hearing from in these comments.
1
Good for you! I hope you can get him back on track.
1
I am appalled at the selfish, heartless comments of so many here, condemning these parents for struggling to figure out how to deal with this burden. It is a burden they did not choose, and one they will have and worry over all of their lives.
There was a time when our familial (and social) responsibility was simply understood. As a family and a society we must take care of those who need help.
What do you all suggest happen to the older son when the parents are dead? Well, I guess there's always the subways, the public parks, and shelter under a bridge.
38
I believe you mistake condemnation of the parents for, in the author's own words, trying to pass on a sense of duty to the siblings through "guilting" them into it, for something else.
That's despicable. There are other options, and the parents can and should do what they can to have a plan of care in place that does not depend on the direct involvement of this man's siblings in any way.
7
The twins did not choose this burden either.
6
I'm in complete agreement, Ted. Is this what our culture has devolved into?
No wonder Trump remains so popular. Self-centered narcissism and lack of compassion seems to be the order of the day.
3
You are wrong in assuming this, in preparing it, in expecting it. Find another way to have Jeffrey cared for. The twins have their own lives—you as parents have no right to determine the shape and nature of their lives after you are gone.
As a sibling of a disabled sibling—who is now deceased, I speak from several decades of experience being in a role I could not choose to leave or change without seeming to be a monster.
You are able to create a place for Jeffrey somewhere now. Do it, and give your other children the gift of your—and your son's— detachment from their lives. If they choose to care for him, that is fine, but it must be a choice free of guilt or expectation.
While I understand how you've come to your assumptions, but I strongly feel that you are morally wrong here—you cannot control your other children after you are gone in this way.
36
It is morally wrong not to care for family members. We are never going to live lives without guilt. Guilt is natures way of making us behave in a civilized manner, which includes caring for those who need it.
1
You are making a lot of comments about other people's moral responsibilities, Bonnie. Have you devoted your own life to the care of a disabled relative? If so, I salute your selflessness. I don't think I could make that choice. But if not, climb down off the soapbox.
2
"It is morally wrong not to care for family members. "
How recently have you used this line on someone?
Are we asking too much of the twins?
Yes.
22
I think a trip to a special needs attorney would be a good idea. From the comments about parsing out life insurance proceeds I am not sure the parents have set up a special needs trust or an ABLE account. Government benefits are a land mine and there needs to professional advice.
68
Thank you so much for writing and publishing this piece. Early in my ordained ministry, I found myself pastor to a brilliant, spunky elderly woman (quite frail) who had two children, one of whom lived with autism. This daughter had grown to adulthood before the diagnosis was known; to her brother, she had just been difficult, inscrutable, and unlovable. I was made abruptly aware of how very few resources we have to assist autistic adults make lives; the jobs set aside for the differently abled, for example, often assume low intelligence and high sociability, whereas an autistic adult brings the reverse. I hope that this piece will shed light on this issue and help us to find better ways to support these men and women, both when their siblings can assist, and when they can or will not.
26
For me this comes under the heading of family responsibility. My Dad died suddenly when he was fifty two, and though I was in college, I had to come home and take over his business to support my mother and fourteen year old brother. (He had been in the refuse business) My Mother was agoraphobic, which none of us knew at the time. I didn't question it, I just did it. At twenty, you just can't see the impact that decisions made, not by you, will have for your future. Now, I certainly resent my mother for forcing that responsibility on me. I finished college, going nights and worked full time, but I will never get those years back. But, I don't have the guilt of telling her I wouldn't do it. So, there is the choice, guilt or resentment.
27
Here's a minority point of view: But for the lucky line-up of genes, the author's healthy, successful twins might have suffered as their elder brother does. As a gift to their parents, who it seems have done everything in their power for their very different children, I hope the healthy children will step up and oversee care for their disabled brother once their parents can no longer do so. To this reader's way of thinking, that's what family is all about.
21
I think this families experience is truly a sad one. I can only hope, and hope that today's families are not experiencing a doctor who says their child should be institutionalized. My experience is that the neurodiversity movement changes things about every five years so that so much more is offered now and in different ways than then. A child and their family today would be offered intensive early intervention, up to thirty hours to assist with behaviors, socialization and communication.
Day habilitation programs today assist adults with jobs and embedded coached jobs. Group homes are less and less viable and many more adults are living in apartments with others in their community. It no longer feels that a dichotomy exists between a burden or keeping in touch.
2
This is one of those cases where the American cultural ethic of autonomy above all is going to cause, and is in fact causing, significant pain. People in cultures that favor family and collective responsibility among extended families are probably considering this article with confusion. That said, we are in the United States. The collective spirit is expressed most strongly in faith communities. Were this family part of one from the time of the birth of the first child, there would be mutual assistance. Those not in faith communities will either have to figure out a way to create secular ones, or continue to look to a government whose job is not to take the place of communities.
8
It seems as though a culture that truly favored collective familial responsibility would feature structures that don’t begin and end with the nuclear family, where responsibility can’t really be spread out.
10
As the mother of a very disabled daughter, I sympathize with the parents, with the young man with autism, and with the twins. No one outside of that family's particular situation can know what course is best for that family.
I think that wanting the twins to oversee the financial arrangements the family has made for their brother and to monitor him in the residential situation where he lives is not asking so much. And it sounds like the twins are agreeable in this.
Mother is not asking that the Twins invite him to live with them.
24
As an adult sibling of someone with a severe disability, what bothers me about this piece is that it seems to serve no other purpose than to shame or guilt “the twins” (who are barely given an identity of their own) into being... what? More excited about their role in their brother’s life? They’ve said they’ll take responsibility for him, but she seems but unhappy that they’re not “more compassionate,” or that this familial inevitability isn’t “engraved on their hearts.” Nick and Grace are 23; they likely need some compassion of their own as they process their childhoods and figure out how to navigate adulthood. Calling them out in then NYT seems to demonstrate a lack of care.
10
*seems to be unhappy. Please excuse the typo.
I appreciate this writer's dilemma, as well as the challenges for the whole family. These challenges are real and defy easy answers. My only questions is why did she not ASK the twins to care for their brother instead of presenting it as a 'duty.' There has to be some space for recognizing that the twins did not create this situation and they also have a right to a life of their own choosing. Their voluntary buy-in is worth a lot more than resentful compliance.
29
Count me as one who finds many comments comments harsh and unimaginative. My husband’s sister had Downs Syndrome so I’ve been there as far as having to participate in her care while raising our three kids and also having to find care for my husband’s mom, who developed dementia. The reality for many adult children with a disabled sibling is that help for the sibling will only be necessary as their parents begin to fail.
I find many comments don’t acknowledge what could happen to the brother given the increasing unwillingness of our social structures to independently provide humane care for people with disabilities. Comments also seem to assume that adult siblings will have crushing responsibilities, but they may well be manageable. Kudos to the parents who have done everything they can to set their son up in independent living. If employment options were better he’d be even more self sufficient. His siblings stand a good chance of being advocates, as we were. That can be an important role. I was not an emotionally generous in-law but I was still committed to making sure my husband’s sister was comfortable and her needs were being met.
The role of mom comes with a retroscope of memories laden with guilt. Some exaggerated. I’m sure mistakes were made but her children grew up well. That says something. I also think that being born into a family can bring responsibilities we couldn’t have imagined when young. But that doesn’t mean we are harmed by fulfilling them.
27
Your husband has shifted his burden of caring for his mother and sister to you. He is lucky you are a generous person. I hope you are well cared for.
9
Reading the author’s trials with planning for their disabled son’s future and the role of his siblings along with reader comments struck a chord. We have a daughter who experiences special needs with two siblings. Our approach was a little different. The emphasis was on community and inclusion. There was never a hint of “burden”. Certainly my typical daughters would indicate that their childhood was impacted by having a disabled sibling that was at times difficult. But they would also regale you with stories of hilarious moments that certainly relate to their sister’s differences. Their relationship with their sister has evolved and now at the ages of 28 and 26, they are ready to support their sister’s future. My husband and I are confident they will lovingly be in their sister’s life. We have put an enormous amount of energy into planning for our daughters after we are no longer living but more importantly on their perspective on differences that differs greatly from the author and many responders concerned with “not burdening” the twins.
Our approach has been all about inclusivity and family and community with a motto that that everybody wins when we embrace our differences. We have also transmitted to our children the sense of responsibility toward others. This extends not only to their sister but to the world around them. Of course their lives are important and they deserve to be able to pursue their own goals. But happily they are turned outward not inward.
17
We are in the same boat, though I am a single parent. I feel confident that my older, "outward" children (now in their 20s and 30s) look upon the youngest (age 17)--with her fragile health and limitations--as an inevitable part of all of our lives and futures. I've always maintained that I could be struck by a car, etc., at any time (they accuse me of being fatalistic), but the truth is raising a disabled child comes with so many responsibilities, that it's another full-time occupation, and I feel like I always have to be prepared to transfer those responsibilities. The more the author sets in place preparations (medical, financial, etc.) for all of her children, the smoother all of their lives will be.
3
Good job!
It is very sad that the twins rarely ask after their brother. I have a feeling that the detachment comes from the unspoken obligation their parents have already assumed will take place.
No easy answers in this case, but it does bring to mind one of the reasons parents of existing children often make the decision to have pre-natal testing: so as not to bring a disabled sibling into the family.
22
My husband's sister has suffered from mental illness all of her adult life. For the first 20 years of our marriage I dreaded the thought of her visits. I considered her a threat to our children due to menacing things she did and said (a death threat once) and her presence brought tension and fear. It took a toll on our marriage as I felt myself constantly in the position of protecting my kids while my husband, out of love, guilt, or whatever mixed feelings, seemed incapable of setting limits. Whatever role the twins take in their brother's care, and I do hope it is some role, I hope they will take into account the well being of everyone involved. Taking care of a handicapped relative teaches important life lessons and is an act of love. But the "rules of engagement " need to be agreed on and respected.
38
One thing I sense was missing in this account was anything approaching a frank, open, two-way discussion with the twins. This is hard, I know, but I think it's essential in this sort of situation. It feels to me that a lot of the parents' expectations and "projections" onto the twins are inferred, not based on actual communication.
52
I appreciate this article for its candor and its uncertainty. Some commenters seems to be punishing the author for those very qualities. How will we ever have honest conversations about difficult decisions like this if we jump so quickly to judgement?
26
What you see as candor, I see as an incredible lack of self-awareness.
27
I suggest that the parents try the serenity prayer. Stop active or passive implications about duty to your twins. With luck they will gain wisdom enough to decide for themselves what they can or should do or want to do.
4
Susan--Nothing fails like prayer, as far as I am concerned. This is an impossible conundrum, and I feel sorry for the twins. Don't know what I would do, in their place, but it would be nice if the parents ever asked the twins what they think about all this.
28
Nothing fails like prayer. What a fantastic way of putting it. Thank you!
6
Roswell--I got a million of 'em, but I didn't invent that one. I think it comes from Sam Harris, not that I'm a big fan of his. People believe in prayer because they feel helpless, and want to put their troubles in "other hands," and are willing to offload their responsibilities, along with their rights. Unfortunately, "other" would be the invisible man, in the sky.
My older child, on the spectrum, but intelligent and independent, was extremely difficult to raise, often defiant and irrational. I did my best to protect my younger child, but it was not enough. In her 20's she expressed her anger that I didn't do more. I heard her and acknowledged I could have done better. We are closer now. It is not easy to forgive myself, but I know I tried my best to juggle the needs of each of my children.
Each is now independent and pursuing their dreams. I try to be a cheerleader with each of them.
33
And who will take care of you and your husband as you age and need care and maintenance? Also the twins? That is a lot of caretaking to expect from them.
85
This story is so moving to me. I want to support you 150% in encouraging the siblings to be close and to make it clear that they may have a role in supporting him as you age. My older son is a typical kid and his younger brother was diagnosed when he was 2 1/2. I made it a rule that they respect and love each other, especially after their Dad moved away. I guess I am one of the fortunate ones - they are extremely close and James never feels burdened. Nick has brought us all many gifts. Whatever happens for your family, I believe that being part of a family comes with love and responsibility.
13
Re: the negative comments toward the author, I couldn’t find any info on her but the surname is almost certainly Chinese or Korean. Family ties, values and relationships are much different in Asian culture and generally much closer than in the West. It is not at all unusual for children to live with and care for parents and siblings throughout their lives. It would certainly be expected that the siblings look after their brother after the parents are gone.
6
Their spouses may not share the same heritage. They may not agree with this assumed arrangement.
6
In a society as rich as the US we should be providing a way out for this family that doesn't include burdening his siblings for the rest of their lives.
But we don't because we are a nation of penurious capitalists without a soul or social conscience.
66
Jake--Sorry, we're too busy giving away our hard-earned money to the already filthy rich, waging unnecessary war around the world, and allowing corporations to rule our country, and our non-inclusive "booming economy." Under these circumstances, most of us can look forward to a very difficult later life.
37
Given that this article doesn't talk much about the interactions among the siblings other than to indicate Jeffrey was on occasion an actual threat to them that they had to learn to defend themselves against and later sexually inappropriate, I do not get any sense of a bond between the them.
Family is a biological accident, in my opinion. If the twins have never developed any kind of bond with their brother or even see him as a source of trauma, it seems simply a bad idea to put the responsibility of his care on them.
The parents can put all their assets in a trust for their eldest son. They can allow their other children to CHOOSE to accept responsibility for their brother's care. But they cannot demand or even expect that of them. Really, they can only model the treatment they believe their eldest son deserves and hope their other children absorb that as the norm.
I am an adult only child and have an elderly father with dementia. I can attest to the fact that caregiving is hard and is something that someone should undertake willlingly and without being pressured into it. My father is in an ALF down the street from me - he is a great dad and I have cheerfully accepted the responsibility of overseeing his care. When I was growing up, we were very close. It is the least I can do. But would I feel the same if he was a sibling with whom I had never bonded and who occasionally made me feel unsafe? I doubt it.
65
As an anthropologist, I fine the trend in these comments academically interesting. This is a cultural issue. Our culture mostly leans in support of the autonomy of the younger children, while the parents (I note the Asian surname of the mother) may be influenced by a different ethic that places far more importance on familial duty.
I often hear people lament about how our culture “warehouses” the elderly and praise the care their parents recieve from immigrant workers from cultures that show much more revererence for elders, yet I suspect that many of these same people are among those who quite harshly criticize the author.
22
Well some cultures do disproportionally favor sons, especially first born sons, to the detriment of siblings.
13
It is unfair to put that on the twins. I could not put that on my son, to take care of his younger disabled sister. It sounds like you have done better than many of us will be able to do. The services just don't exist. I make my daughter's life as wonderful as possible, every day. I will do so until the day I die. That is all I can do. She is very happy and lives a most wonderful life. I have given up everything to assure this happens. When I pass her world will crumble. The availability of services in most states is horrific. There is NO ONE out there who cares or is willing to help. There is just lots of lip service. I no longer have hope at all, except the hope that my daughter dies before I do. There is no hope, there is no help, there is no future. There is just us, today. Just like most people
68
This is one of the saddest, unfortunately most true letters I have ever read. I have worked in social services for almost 40 years and have seen people struggle needlessly because of the wholly inadequate social safety net in this country, and it is getting worse. I have personal family experience that has been quite a lesson in what is not there to support people struggling with life circumstances that have resulted from no fault of their own, but they are treated as if there is nothing and no one who cares in the wider society - they are told, in essence, “too bad, so sad”. The total lack of hope in this letter after doing so much to ensure care for your daughter in this lifetime has me crying uncontrollably. Who are we as a country that cares so little “for the least of my brothers”?
3
I’m sorry. That must be such painful knowledge to live with. Glad that your daughter is enjoying her life meanwhile, a great gift you’re giving her.
OMG!! I grew up in just such a situation, the younger sibling to a first-born son with a disability. Fear, rage, confusion; these are the lasting memories that your twins have, even if they don't voice them. They likely resent as well the expressed wish that you will have them "take over" their older brother's care. I know I did. Now the tables are turned and I am the parent of a quite disabled daughter with cerebral palsy. I DO NOT expect that her older brother's interactions with her will be other than fun, voluntary ones. As their parents we owe them, and our daughter-in-law, that. We bought second-to-die life insurance to fund her special needs trust. We signed her up with an organization that will take over the "mom role" when I am no longer able. SEE A LAWYER who specializes in special needs law and make plans to have your son cared for; don't try to guilt your other children into taking over. Love is not something you can enforce.
206
Bravo to all you wrote!
13
Thank you for sharing this. I also grew up in a similar manner, with an abuse older sibling, from whom my parents couldn't - or wouldn't - offer protection. The rage, fear, and abandonment I felt then is still something I am struggling to manage, into my 30s. The filial piety or whatever I feel for my folks can't convince me to participate in my sibling's future care.
16
The writer would greatly benefit from your insights, and might even get down on her knees and beg forgiveness from her twins. However, given the tone of the programming and prodding she has inflicted on them, and the expectations she still voices, I doubt it.
3
I work daily as a medical professional with the developmentally disabled and medically fragile patients and their familiies this case isn't particularly unusual for me to understand.
I assume the parents have already gone thru the legal maneuvers it requires to assure that they have full guardianship of him as an adult.
What I see works the best in families in which there are siblings involved in deciding future care of the affected sibling, is to initially have a formal sit down meeting with them to discuss freely, without judgement or assigning guilt, the many avenues that could potentially be resourced to assure that everyone involved has a say about choices. I don't see that these parents have done that with their twins, at least yet.
These twins deserve to have their say in this discussion. It also works best when there are extended family members or even clergy present to help neutralize feelings as well as to serve as a guide for all parties, not just one.
What doesn't work are decisions that are made either in the heat of the moment, or unilaterally and without input from all parties. Best of luck to everyone.
54
It seems like the goal of the author is to publicly shame her children into caring for their brother.
98
I didn't get that feeling in the least. The author is confronting some hard truths most of which don't have a pretty ending. She and her husband seem to acknowledge that a bond never formed between the siblings. What she is struggling with is what to do next. You can't make something exist simply because you want it to. I wish her the best of luck.
20
Make it public was disrespectful to all involved.
11
Then why didn't she see lawyer rather than writing an article.
1
I do think that you are asking too much to expect the siblings to be responsible for Jeffrey to the extent that you have been responsible for him. I believe that they will be responsible for him, but this is legally and morally their choice, not yours.
I spent many years working with adults with disabilities and know how hard these choices can be, but I also know the options.
I would suggest that you set up a separate trust fund for your son with separate insurance policies that will go into that fund. Consider having the fund professionally managed.
Check pension plan options. I have a disabled sister and have decreased my pension so that, if she dies before me, she will get my pension until she dies. This may be an option for you.
Most states have a "public trustee" who can manage the funds of a person who has funds but is not able to manage them himself. This will probably not be necessary but good to know.
It was not your son's fault that he had autism and you are to be greatly admired for keeping him at home. He has had and will have a much better life due to this.
As the end of life becomes inevitable, consider a into a group home for adults with disabilities. Many of these are very good. You definitely want him in that type of setting before you die. Imagine how hard it would be to deal with your loss and a move at the same time. Fund this with the trust fund or insurance. Then your children can be his brother and he will not be a burden to them.
41
He actually is in an independent living facility for disabled adults, the author said. Not to be rude or anything, your advice is very thorough, I just wanted to point that out.
10
The responses to this article (which was heart-wrenching in the extreme) are even more gut-wrenching. Prepare for the worst with a disabled child? Of course, and the parents seem to be doing the best they can. Raise their other children to be independent, successful adults? Check again, and the achievement should not be undercounted. Express a wish that their oldest will be taken care of by their twins (and I read this as having morphed from an expectation to a hope over the years)? Human.
20
But she does not phrase this as a "wish". She says she believes the twins have a "duty" to take responsibility. "We sometimes remind the twins of their duty to care for Jeffrey. . ."
That's just wrong.
22
The twins cannot be expected to do this. Jeffrey may need to live in a group or transitional home close in proximity to one or (ideally) both of the twins. My mom and I learned the hard way that almost daily monitoring of persons in "care facilities" is needed. My dad was in "one of the best" for 1-2 years. Medical care needs to be monitored, dental care monitoring is essential, accounting for personal possessions and the problem of stealing (mostly on the part of staff). This is enough to ask of them.
29
To the author and her husband: Please do not fool yourself that because you have wished and dictated it to be so, your twins will take care of their brother with autism. Better to plan for his future without making any such assumptions.
My neighbor is a prime example. 60+ year-old son has schizophrenia that has never been addressed with medications (he refuses all). Both parents both have dementia now, with the father worse off than the mother. They always "expected" their other son to take good care of his mentally ill brother. Yeah. His idea of "taking care of" his brother is to allow the brother to do whatever he wants. The well brother (also in his 60s) runs back to the sanctuary of his own home as quickly as he can, while ignoring how much his mentally ill brother has deteriorated under his "care". (Structure, structure, structure has always been important in keeping him relatively stable; that is gone now.)
The only way to insure your son is taken care of is to make sure you make the plans. Your other children may or may not take good care of him. Are you willing to take the chance?
34
Mentally ill adults can do as they please, even to their own detriment. A brother has no power over a sibling’s rights in our society.
Modern medicine has no sure treatments for schizophrenia, but you expect a sibling to manage his brother?
Wishful and unrealistic thinking.
18
When I read the headline and even part way into the beginning I started to feel that you were asking too much of your twins. But
having read of your balancing act I think you have done your best beyond which no human can go further. I think you can trust them with their charge but I hope you haven't saddled them with guilt at the moments when they will surely ask themselves if they have failed you and him. I think it's time you told them that you don't expect them to be his parents but to do their best too and that is all they should ever do. Siblings are not parents. Many are close forever. Some are not. They too will do their best and should not have their lives and those of their future families forever burdened with underserved guilt. Otherwise you've done fantastically.
37
Of course you are asking too much of your twins. Their brother is not their child and is not their responsibility. You need to be sure that the mechanisms to take care of him financially are in place, even if that means that the others do not receive anything when you die. The peace of mind for your twins in knowing that they are free from the obligation you have tried to force upon them will be well worth it.
89
I do not envy you. God bless.
13
The ones I don’t envy are the twins.
15
So, I learn from all these commentators how negligent I was not to establish a trust fund (ha!) or make “arrangements” for my own son with autism. Or how his behavioral challenges somehow were my fault and constituted abuse of his sibling.
Let me set you straight: we parents of kids with autism know more about “arrangements”, special needs trusts, group home staff qualifications, and the limits of Medicaid in these cases than you do. We live it every single day.
What autism robs you of that hurts the most isn’t the sleep, or the freedom to work and travel, or watch an hour of TV without 16 interruptions. The pangs you get when other people’s kids talk, and have friends, get driver’s licenses, and graduate, ——all that lifelong pain chronic but perfectly manageable. Alcohol not a perfect medication, but often helpful.
THIS is the real hell of it: autism means you can’t die, because your child is always going to need you. It’s awful.
The unwillingness of these commenters to open their minds and just hear what it’s like! Those of us with autism in the family must give up the luxury of pretending everything is all fixed. Autism reveals what us “neurotypicals” are made of, —-as mothers, as citizens, as professionals.
65
Thank you for writing so clearly what it is like to be raising a child with autism, or other special needs that present similar challenges. Its easy for others to judge, but unless you are living it, you can't really understand. The lack of resources and services makes it exponentially more challenging. The financial cost both in getting additional services and lost income due to need to care for the child is often overlooked. The emotional costs are also extremely high. I know my self and other parents of kids with these challenges find our support from each other, as its the one place we are not judged or second guessed. I thank the author for writing and shining light on this difficult topic, we all need to feel less alone in this challenging journey of raising and supporting our kids as best we can. No ones parenting is perfect, ours is far more complicated.
14
Your twins aren't especially interested in Jeffery. Unfortunately one compelling characteristic of many mental illnesses is a an utter lack of feeling for others. Why should they care? He cares nothing for them. An institution will be your best bet. To burden the brothers with this responsibility is also egotistically is the extreme on your part.
36
This is an outdated, cruel, and just plain wrong perspective on what autism is. If a person on the autistic spectrum cannot look you directly in the eyes, that does not mean he or she is evasive or untruthful. If a person on the autistic spectrum cannot express feelings of love and affection in ways that YOU think are appropriate, it does not mean those feelings are not as deeply felt and as real as your own. Autistic individuals have rich and complicated emotional lives and strong bonds to their families and to others.
11
I work with students with various special needs, and I understand that communication looks different coming from some of them.
But there was nothing in this article that told me that Jeffrey and his siblings have a close relationship. On the contrary, it sounds like he has been something of a force of nature they've had to deal with their entire lives. I don't envy these parents at all, but they need to let the younger siblings make their own choices about how to navigate their family.
8
Thank you for this.
You have always believed that your twins should take care of their brother.
I'm pretty sure they have believed for nearly as long that you should have institutionalized him.
What unbelievable, arrogant presumption - to sentence your children for life to the struggle you chose and hated nonetheless.
Signed, the brother of a disabled sister who was expected to take care of her by parents who did not plan for her future in the slightest.
113
As a single parent of a now 26 year-old autistic son, I found this letter to be overwhelmingly sad. More than one disabled person in this family.
19
It is a sad letter but why would you label the writer disabled? Seems cruel unless I have misread your meaning. You chose to be a parent and I am certain you have made plans for the care of your son after you are gone. You have no other children and so cannot assume that they would be the plan for care. If you did however would that have been your choice?
2
Human beings, even the siblings of disabled people, have the fundamental right of self determination. If you have chosen to take on the struggle of raising an autistic son, you are a very giving person. If you chose that for your children, you are violating their human rights.
4
Start planning and saving now for someone or some organization other than your twins to be financial responsible and provide care for your oldest child. Only by accident of birth are the twins related to Jeffrey. Your selfishness is beyond belief, and your attempt to gaslight your twins is revolting. The duty to care for Jeffrey falls entirely on you, you who brought him into the world. Deliberately guilting your twins into caring for Jeffrey just demonstrates how little you care for them as individual, only as potential caretakers.
"Are we asking too much of the twins?" Yes.
"What is the responsibility of a sibling for a sibling?" None.
"When we are both gone, the burden will be passed down, along with the silverware and the photo albums, ..." Comparing the life-long care of Jeffrey to the silverware and photo albums? Wow.
"Nick and Grace will be forced to take up where we left off." What if one or both of them are killed in an accident before you die? What will happen then to your plans to dump Jeffrey on them?
"And we can only hope that we have done right by all of our children." Stop hoping and start doing and planning for Jeffrey's care, without relying on the twins.
65
None of these comments are written from the perspective of the disabled sibling. #ableist
4
It’s not “ableist” to recognize the twins were abused by their brother. It’s reality.
73
He probably doesn't function at that level.
Such people do exist. #pleasegetoutmore
1
I wonder how different the comments would be if Ms. Choi had written that she does not expect her twins to care for their brother. I think she would be equally judged for that, and many would write that the twins have a responsibility to their brother. Either way, Ms. Choi would be criticized for what is a personal, family choice. She left herself open to judgement by publishing the article in the first place, and I think she knew the criticism would come regardless. Criticism is part of the burden borne by parents of disabled children. Others seem to always know what's best.
31
I am a speech pathologist of 30 years. Having worked with countless children with disabilities of varying severity, I am frankly stunned by the bellicosity of many of these comments.
To raise a child with moderate to severe autism while simultaneously bringing up a set of twins is a Herculean task. Bear in mind this couple was in their 20's when the twins arrived! The stress on such a family is punishing.
The stress on the siblings is formidable, and yes, no one asked to be in this situation. Sadly, few of us would be able to accomplish raising such a child with total grace and ease. It's quite messy.
However, bear in mind, the article clearly states that the parents have successfully placed their child in an independent living community, where he is probably overseen by counselors and where he can maintain a certain degree of independence. Securing such a placement for a disabled child is a feat in and of itself. Negotiating housing for adults with autism is a daunting task, as is facing the bureaucracy of the special needs world.
Yet, these twins have also emerged victorious, with careers, friends and significant others. The parents must have done something right, and the twins should be commended for their resilience.
In addition, the cost of raising these children is not only an emotional burden but also a financial one. The parents simultaneously need to prepare for retirement.
Let's all show compassion and honor the complexity of this situation.
172
Thank you for your post. As an SLP working in clinical education I strive to teach my students to respect difficult position of parents for children with disabilities. We cannot understand the walk others may face but we can relate to them with compassion and grace, be a resource when needed, and shoulder and ears for leaning and listening, but not a judge.
23
Yes. Honor to this author for her courage in writing and her parenting.
10
I have compassion for the twins.
7
Thank you for this article. I have a hard time understanding all the negative comments. Is family so unimportant these days, that we prefer let a stranger take responsibility for our siblings? Is it really such a burden to expect family to take care of family? It is not like the expectation is for the twins to personally provide 24/7 care. I think they have done a tremendous service, not a disservice, to the twins by expecting them to take care of their brother. It is a testament to the twins that their parents believe they are responsible enough for this, and that they have accepted the responsibility.
26
As a special needs teacher, I often encounter parents in denial about the severity of their child's disability; occasionally this denial extends to what I'd call a narcissistic-by-proxy view of the world around their child-- basically that the entire world is subservient to their child's needs no matter how tyrannical or dangerous to others. For instance, I have a 12 year old student who has poor emotional regulation, & who, eg, will upredictably throw desks & chairs across the room, not caring if other kids are in the way. In discussions, his mother only cares about how this impacts her child, how to treat him, not at all about the other children's safety. This is what the author is like.
Don't get me wrong. I have sympathy for her situation. It is a hard, unfair situation. My heart goes out to you.
However, my heart also goes out to your twin children. From the essay, they've been taught that their own emotional & physical safety takes second place to their brother. They can't even have a slumber party without him assaulting them.
They are not caretakers. They are autonomous human beings. I'm sorry but it's a form of abuse to expect them to continue to sacrifice their own lives for your son. You are devaluing their lives. You need to accept their lives are just as important as his. They deserve safety, esp. emotional safety. Hire a nurse/caretaker to take care of your son. This is covered by the state. Set it up now, so it's well in place for later.
119
My goodness, this seems harsh from someone with your background and training. "Narcissist-by-proxy" diagnosis on the basis of this heartfelt article? I think the author has not been perfect. But she has tried very hard, and, with her husband, accomplished so much. She explicitly says that she is not sure she has always done right, and that she is not sure that her expectations are fair...She is working it out. And, with herself and her husband in their 50s, they have some time, hopefully. I think, looking at the current state of play, the whole family has done pretty well in very tough times.
13
I'm not 'diagnosing' anything. She has published a piece in an international paper & asked us for our opinions, so I'm giving her my opinion. I'm not a professional psychologist, nor could I diagnose her without seeing her even if I were one. I'm just using a word I made up that describes what I've seen for 15 years now and what appears to be the case here.
It doesn't matter that she has 'tried very hard.' This is what I'm talking about--people feel more sorry for the parents than the kids. I feel sorry for the kids. All of the kids. And as for the kid with autism, he needs boundaries. He is not entitled to hurt other people. His needs do not always come first. If his parents want to make the choice of caring for him, that is natural & understandable & their choice. But to tell their other children they have less value than their son, well, no, they don't. Just because someone tries very hard doesn't mean they can't be abusive. People 'try very hard' when they have husbands who beat their children, or mothers who are alcoholic abusers. Life is hard. Most of us in fact 'try very hard.'
What's relevant is the safety of her children--including her twins. They've 'tried very hard' too, wouldn't you say? They've gone through 'very tough times,' yes. So therefore let the other two children have autonomy. Get a caretaker. Again, the state covers this if you cannot afford it.
4
I see you live in NY. The author lives in Maine, where we have only 1.2 citizens, not all of them tax payers. We are also the oldest state in the nation, having recently surpassed Florida. I doubt that Maine provides individual caretakers for autistic children, especially with LePage as governor.
11
To those self-centered narcissists who are spewing their vicious vitriol on the author – who are you to judge the anguish of a parent who is worried all the time about their child’s welfare after they are not there? They can only turn to the siblings who have an obligation towards their parents and their brother. As a society we too are obligated to do more ensure the welfare of those of us who need more help and assistance than we do.
15
"Vitriol" appears to be the cliché of the day. All the comments I've read, while largely supporting the other children, Grace and Nick, have been commendably understanding of the complexity of the situation. I haven't seen any attacks on the author.
If we're not allowed to express differing opinions, what's the point of a Comments section?
17
Ah, but this reads as if the parents are concerned for their *child's* welfare, rather than their *children's* welfare.
17
The decision will be made by your twins not by you. You have made your wishes known and made the financial provisions that you can. Consider naming a Trustee/Guardian to handle your oldest son's affairs. It sounds like your youngest children need to know you support their choice , whatever it is.
23
I am stunned at the lack of compassion for these parents and family by most comments that have been made. Are these the same compassionate people that care about the poor and suffering, but only when they're not family members? Only when some government "entity" out there takes care of them? Do you people realize how difficult it is to care for a loved one with mental disabilities and how difficult it is to find and pay for help? If a family is not duty bound to care for its own members, what have we become? Yes, we do not choose to be born into our circumstances, but we are. Life is not fair. Some of us find that out sooner, some later. We do not choose our parents, but when they are old I would hope that we take care of them as best we can and that we have matured enough and learned enough in life to know that they did the best they could. It's easy to love the lovable and tractable be they family members or members of our community. It's harder to love the unlovable, the mentally ill, the convict, the illegal alien, the poor who make seemingly terrible life choices. If we do not practice true love within our families, how can we practice it as a society?
28
Yes it is very hard to grow up with family members who have disabilities, mental illness and other special needs. Many choose to ignore the needs of these family members and build their own lives. We all do have free will to make our own choices. It says a lot about our society that so many detach completely from family responsibilities without any concern about the consequences. We are a selfish consumer society in which people are disposable. I would advise the author that she can hope that the twins will work through their issues and rise to the occasion, but not to depend on it. If there are other ways to get Jeffrey what he needs, then pursue those additional options. The twins will hear the pervasive message from society that it’s a quaint and outdated belief that rising to meet family responsibilities is important to character development. And yet, we continue to be a spoiled and stupid society that can’t figure out and prioritize basic values. For example look at who we just elected as president, the idiot king, a cheater, liar and racist. Strength of character is clearly not thought to be an important American value, so plan accordingly.
8
Unfortunately, not all families can "practice true love" with the existence of abuse, mental or physical illnesses, drug or alcohol use, criminal behavior, and so forth. My paternal grandmother was ostracized by most of her family (and that of her husband's) when she divorced her husband after he suddenly began beating her and showing other signs of mental illness in his 40's. After his death in his early 50's, it was discovered he had a brain tumor (he refused to see doctors of any sort). Should she have martyred herself by staying with him? Should my college-aged father have quit school and foregone his military career to take care of him? I know many adults who have cut ties with their parents or siblings because of such issues, and others who end up arranging their lives around the care of impaired parents and sibling. I don't see it as lack of compassion - it is more about the capability of the individual to take on such burdens. Not everyone has the ability to financially or emotionally care for others, whether they are related or not.
5
I do value my family. Which is why I would never, ever, allow my children to be subject to the type of emotional abuse that I was subjected to by my mother as a child, and for which she has shown no remorse or ability to change. If she requires care, it’s not going to be by me. I chose to have my children and to take care of them and have a a lifelong obligation to them. I did not choose to be born to my mother. My family does come first- my children.
5
This resonated with me. We just had an autistic 8 year old with us for a few days and were exhausted when he left. Hard also was watching how his 10 year old sibling tried to protect him, watched the tears as she said the family can't go anywhere with him, heard her quietly say 'he can't help it.' I watched as he literally bounced off the walls, had a screaming fit when he showered, and then lay on the floor kicking violently. He is non-verbal so we can't know what he is thinking, but it is clear that his mind doesn't work the way ours do.
Your family has endured a lot in the name of love. But let your twins have space as adults. They will no doubt step up when the time comes.
38
What a wonderful story, what a wonderful job you have done under the circumstances. Two thumbs up to your spouse for supporting you so well. That does not always happen, a friend recently divorced her husband because he did not support their autistic child, they also two normal children. Once again, two thumbs up to you.
12
" Two thumbs up to your spouse for supporting you so well. "
Are you kidding me? This is her spouse's child as well. Choi goes on about the siblings' "duty" to their brother. If anyone in the family has a "duty", it is the child's FATHER.
He is not "supporting" her; he is fulfilling his paternal obligation. Fathers do not deserve "two thumbs up" for doing their jobs.
23
Yes, you are asking too much.
44
Awfully harsh response to a heartfelt essay.
9
Tell that to the twins.
1
Thank you, Elizabeth for your courage, your honesty and your heartfelt writing. Any of us reading your words can relate with whatever life has handed us that presented disabling outcomes. The complexities of your life-situation, your honest fears, your real worries shine light on how one mother copes with her reality.
Because I can appreciate not only what you've written but what I suspect you cannot say, I am appalled at the responses in the comments section. Appalled but not surprised. I was saddened after reading the essay; I cannot find the words to describe my feelings about the tenor of the comments or the 'recommends' that support them.
As your essay reveals, there aren't foolproof answers, easy or otherwise, for what you confront. Some worthwhile suggestions have been offered by readers and may give you direction.
Thank you for so eloquently sharing one family's story. I hope you will not be crushed by the venom that flows through the reactions to it. Your love for all three of your children is revealed in your words.
22
I think you are confusing direct input with lack of compassion. Of course we feel for her..... we can see what she can’t: that’s she’s put her other children in an untenable position.
42
on memorial day i read of this family with a mix of sympathy an sadness. my brother now gone was developmentally disabled,an all our family worked, struggled,an tried to make a good life for him.It has taken me more then 10 yrs since his death to find some peace with what was required of us ,but i still can't regret what he taught me ,and hope the Choi family can come together,with some kindness an love for each other.
18
You are certainly trying to do your best in a very difficult situation. Have you spoken with an attorney about a Special Needs Trust? If it is available in your state it is something that may be set up specifically for Jeffrey's benefit - perhaps funding it with a life insurance policy, so that the twins will at least not have to finance some or all of the care of their brother. I have personal knowledge of the benefits of such a trust, as my parents' attorney suggested creating one for my disabled sibling. I am fortunate in having a good relationship with my sibling and with knowing that I can use my own money to take care of myself (I am the older) without being a financial burden to my own children. When I die one of my children will become the trustee of the trust, replacing me, so that she will not have to bear any financial responsibility for her aunt, who will probably outlive me. This is a situation that can affect more than one generation. I have to say that I am acutely aware that I am fortunate in my parents' ability to have funded such a trust. I only offer this as an option to be researched. I wish you all the best.
30
Like many of these stories, maybe there are not just enough details to flesh out a story, or the author feels a need to stick to the assigned title of the story.
I don't understand why there's no talk about other family or about the role of a financial adviser to help with putting together a plan on how to retire, pay for their own elder care, pay for autistic child's care. Maybe lots of life insurance would be the answer. Retirement savings could go into a trust which could be used to care for Jeffrey if the parents die. Who is the trustee now, and who was it 5 years ago ?
And there is a very real scenario that the twins will have to deal with two elderly parents and their autistic brother at some point ... which could be unmanageable or could work, but the parents should be thinking through these ideas now. Maybe a rancher bought in their 50s near support services with room for caretakers ..
I can understand the statement "we are family and we take care of each other" and an honest conversation about future care of their brother now... but honestly, why start with the burden talk until the twins are of age? I am sure they coped with enough reality as kids.
The odds were high that mom and dad would be able to cope with him (he also seems high functioning) so why put the onus on them so early. Why not let them do fun things ... come with us to x so we can enjoy all of you together and then transition to more difficult topics say now .. in their 20s.
9
I am the older and only sibling of a brother who suffered a Traumatic Brain Injury at 30. Before that he was an accomplished, thriving individual. After a long time of rehabilitation he went to live with my parents in another state.
My parents talked to me over the years about taking over his care when they were gone. They actually wanted him to live with me. That I could not promise, but I did promise to make sure he was okay.
My parents facilitated this by setting up a Special Needs Trust which has proved invaluable. He is able to live in a residence where he is well looked after.
Still, oversight for a disabled person is a lot of work. I had to move him to be closer to me. The paperwork alone can be very time consuming. The visits are stressful when he exhibits his particular brain glitches and repeats the same ongoing complaints.
But we are both in our beginning senior years and I am older than he is. So what happens when I am no longer able to care for him? What happens if the Trust runs out of money? Does that responsibility then fall to my children making three generations of care givers?
42
As a psychiatrist, a large part of my practice is caring for people with autism and other developmental disabilities- the key issue is that government support (at both the state and federal level) for the care of these individuals is woefully adequate= we closed the state schools of generations ago and replaced with it minuscule social security payments and medicaid- neither of which cover the cost of living or needed medical/psychological care. This leaves the burden on families.
41
Ms. Choi, if you are going to expect your twins to take on the emotional and logistical work, do ensure that they will not have a financial burden. My older son is severely disabled. If he outlives us, my younger son will eventually be his caregiver. We have a huge life insurance policy and have already set up the necessary trusts, so that neither will ever have to worry about money. “Take care of your brother and have a paid-off house” is a lot kinder than “take care of your brother because it’s your duty.” We aren’t well-off, but we have prioritized the boys’ future stability.
63
You have done right by all your children, Elizabeth.
You have done something especially generous for the rest of us by writing so eloquently about your family & your life.
A family is a unit; blessings are shared, and so must burdens be. The horrors finally being disclosed about the abuse of vulnerable institutionalized persons, whether elderly being raped, or autistic youths being battered & robbed, should give everyone pause. Putting someone important to you in an institution should only be a last resort. Read about what happened to the father of Gen. McMaster, who surely chose a superb institution.
It is wrong to declare that "autism is incurable." We don't know. All sorts of remarkable medical discoveries have come along. More autistic humans are being born, adding urgency to the search for better means of prevention. Autistic humans add to our understanding of the human mind & the psyche. They should not be viewed as "defective." We all need to know more about what is hurting children in their earliest development.
To the person blessed with perfect functionality: you are the one blessed. Accept your obligations for your kin with good grace. They are the ones struggling. They are the ones who require mercy, compassion, support. What good we do for others certainly comes back to us. Karma is not a myth: there is an actual net gain for those who are willing to bend to accommodate the needy ones around them, especially family members. Kindness is always rewarded.
13
It’s sad for me to recognize that so few commentators can imagine or prioritize what’s best for Jeffrey, and seemingly see his siblings needs for a “full life” as more important (or perhaps more attainable). It’s a clear statement of the value we place on disabled lives and the way we’ve shifted our expectations of family.
13
When parents have children, it's their job to prioritize what's best for ALL their children - not one child at the expense of the others. Furthermore, I don't actually think most people here are arguing about what the twins should or shouldn't do for their sibling. The discussion is about the way their parents treated THEM - that seems to be where things went wrong. No one is trying to tell Nick or Grace, "Don't take care of your brother."
62
Rather than address the profound ethical issues raised by the writer I’d rather ask this:
What possible purpose can have been served by making public in the most complete manner possible—in the pages of one of the world’s most widely read publications—a set of family and personal conundrums that will require profound honesty, trust and continuing communication to begin to resolve?
These are the attributes that are least likely to be found in public discourse of any type but, most assuredly, not these days and not online. I wonder how much her twins will appreciate any of this though I certainly hope she got their permission to share the story before she did.
The writer may have thought that she was sharing the challenge to show other families that they are not alone but I think that she may have profoundly betrayed her own family in the process.
I wish she had got better counsel or thought more deeply about what the repercussions would be by putting this in the pages of the New York Times and not her personal journal for sharing with a more appropriate group of family members and friends.
Unfortunately, it is much too late for that now....
41
Sharing these stories helps others in the same position. It is not a matter of shame or need be kept as a family secret.
21
What about her twins? Don’t they deserve privacy? This is just another example of the parents ignoring their needs.
31
Tolstoy said “All happy families are alike; each unhappy family is unhappy in its own way." It's not a stretch to apply this quote to families with a disabled child.
My son, 22, has autism but in reading your description I don't think he has a lot in common with your Jeffrey. My daughter is 19 and a college student.
My husband and I determined when they were very little that we would not expect our daughter to care for him, if he needed care, when they grew up. We have a Special Needs Trust and have hired a guardianship company.
When they are young it's not always easy to figure out how things will work out, and it turns out my son is capable of working 40 hours a week at a retirement community as a housekeeper.
I'm curious why your son left the school system at 18, mine stayed in until 21 as allowed by law to participate in a job training program that led directly to his employment.
35
I know this isn’t your main point, but research on families has found that Tolstoy had it wrong. Unhappy families share more characteristic with each other than unhappy ones: unhappy families are alike, and happy families are happy in many different ways.
4
I notice very often that people with disabled siblings often do not marry or have children. One of my friends is sad that her daughter and son-in-law did not have children. But one day she said, "My daughter did so much for the twins when they were growing up that she probably feels as if she has already had children."
47
Sometimes it's just a practical matter! They know they can't afford, in terms of time or money, to do both - raise their own children and care for the sibling.
9
No one knows what the future holds for any of us.
It is good to have children.
It is also good not to have children.
There are positives and negatives about either situation, so it is best not to be sad over the children someone has, nor over the children someone does not have.
No two people will experience the same set of circumstances in exactly the same way, so assuming either having or not having children is the "ideal" is wrong.
Appreciate whatever you have. If you miss having more children in your life, reach out to friends who have them, who will be happy for the extra presence (and presents). If your adult offspring are childless (that may change; they may pull a Hugh Grant) enjoy your time together with them as adults & don't treat them as if they have 'failed': they haven't. Preserving the quality of your relationship with adult offspring at the optimal level is more important than meeting some kind of socially mandated milestone or rite of passage.
14
May also be difficult for the siblings to find a person to marry who willing accepts such a burden as part of the marriage bargain.
23
"We have always believed that our twins should take responsibility for their older brother when we no longer can."
Dear Ms. Choi,
You and your husband simply do not have the right to assign your children the duty of taking care of their brother.
It is the twins' decision.
168
Dear Mr David,
It is not your place to decide what extra-legal rights and responsibilities family confers. Here's a news flash: disabilities are extremely common. If family will not or cannot care for the disabled, what is the societal obligation? Should healthy siblings (and cousins, etc. for that matter) live much better than a disabled family member? God may know the answer to those questions, but I don't think you do.
7
If Mr. David does not have that right, you do not have the right to judge him either.
1
"I wonder if we failed as parents to instill compassion in the twins, if we somehow hardened their hearts instead of softening them."
Don't be so hard on yourself. In my experience, all you can do as a parent is to teach your values. As your children mature, they will decide for themselves which values to embrace and which to reject. You can't force them to accept your values.
21
No one chooses their family parents, siblings or otherwise. I have a mentally ill sister that my other sister and I will have an obligation to look after after my parents are gone. She unfortunately does not qualify for a group home nor would go if she did. While this hangs over my head as a looming obligation someday and of course worries me, what is the other option? Family is family and we will do the best we can. I think these parents have done a wonderful job to minimize the burden to the best of their ability and I hope my parents do the same for my sister and I.
33
I am struck by the variety of negative judgments heaped upon this family. Kudos for Ms. Choi for laying her family out there for all to see...she has obviously hit a nerve for many of the commentators.
21
For the past nearly 14 years I have been my brother’s keeper. And unlike the article, he is developmentally disabled, not autistic. I know it’s different than dealing with someone with autism. We are both in our 70s. He lives in an assisted living facility nearby where he is well taken care of on a daily basis. I see him about every other week and we talk once or twice a day and I manage many aspects of his life I was frightened, to put it mildly, when I moved him close to me as our father’s health was failing. When I think of the sacrifices my parents made to deal with a differently abled child, I now have nothing but love, respect and admiration for my parents for shepherding him through his entire life. And any anger, fear and shame I held on to because of the impact on me growing up with a disabled sibling has long dissipated. And I have a very special relationship with him that sometimes drives me nuts and other times fills my heart with love.
76
I am disgusted by all the posts here that squarely deny any responsibility whatsoever on the part of Nick and Grace for their brother. Apparently by choosing to read the comments, I have waded into a swamp of resentment and barely suppressed fury that I didn't foresee at all and that leaves me feel dejected. I can only hope the commenters are a self-selected group of sibling haters, not a representative slice of the US population.
I grew up with a severely mentally disabled younger brother and with parents who were lousy at their job, to put it charitably. We lost our mother as young adults and with our father never having been much help, I have been my brother's keeper for the past 22 years.
He is well placed in a good home (but it was a hell of a job to find the place) and he is financially provided for by an inheritance. But I still have to be in touch with him, supervise the caregivers, take him to doctors and simply be his family and his link to the outside world.
When my mother lay dying and I literally, literally had to think of the last sentence I would ever be able to say to her, I said "I'll always be there for him". I meant every word of it and I also wanted to ease her mind. I still choke when I remember her reply: "Don't forget, your life always comes first."
I'm grateful that she said this but I also know that she knew how deeply I love my brother and that I would never let him down.
108
Thank you for this comment. I share your shock at the reaction of so many in this section. Bless you for your devotion to your brother, and good for you in finding that there is a great reward in caring for those who need it most, even those who cannot ever acknowledge what you have done for them.
1
Thank you for your perspective. I think a lot of the readers of this article have no idea what it means to be in a family with a troubled sibling, whether mentally or physically disabled. No-one is saying that the autistic brother has to be the financial responsibility of the twins or that they have to move him into their house but that they just keep watch over him, make sure he is safe and try to ensure some of their parents' hopes for his long-term care are fulfilled, as you did for your brother.
The selfishness in some of these responses is amazing to me.
The responses also surprised me. As an only child, I can only surmise this has something to do with the sibling bond. I would never abandon a child or spouse in similar need.
My mother’s younger brother was schizophrenic. Only those with similar burdens can know how heavy it is.
51
I believe you are asking way too much of your twins. A guardian should be appointed for Jeffrey, in the event of you or your husband’s untimely passing. That is the twins’ brother, but they are not his keeper.
65
What do you mean, “a guardian should be appointed”? Guardians are usually family members. Professional guardians are not usually appointed unless no family members can serve.
4
What does Ms Choi mean by "take care of"? Does she mean guardianship and oversight of care arrangements, handling living wills, insurance, and other bureaucratic challenges? Or does she mean paying from their pockets for Jeffery's care and perhaps having him live in their homes? I don't think this is spelled out clearly in the text. One is a comprehensible shared set of responsibilities, the other is an ongoing nightmare.
53
This comment hits it on the head. It is not spelled out what the author is hoping her twins will do on their brother's behalf, and it makes me wonder if she has been more clear with them. Most importantly, I hope she has conveyed to them that she does not expect them to bring Jeffrey into their homes, thus imposing on her future grandchildren the childhood her twins experienced.
17
Yes, you are asking too much of the twins.
62
I understand the crushing anxiety his uncertain future must provide you---but YOU MUST STOP PLACING THAT BURDEN ON YOUR OTHER CHILDREN.
This minute.
For one thing, you do not have the right to control their future. The decisions *you* are making for them will affect future spouses/families. You simply lack the authority or moral right to extract a promise they can't know if they can keep. There are financial and emotional implications of what you are asking--and the crushing burden they are anticipating is visible in their interactions with their brother.
The other reason you must stop what you are doing is that it is COUNTERINTUITIVE to your goal. Compassion is a gift given, and not extracted.
If you had wanted your children to feel compassion for Jeffrey, you should have shown same to them when they were small. But you didn't and they resent him.
Well meaning as they may have been, the actions and beliefs of you and your husband produced a wedge between your children that will now take time to heal.
Give them room. Though it may be too late, *you must match the same level concern for their future* as you do their older sibling. They are individuals still trying to cement their personalities and they need the room and SUPPORT to figure it all out.
YOU need to get out of the way, today, right now, and allow them their own relationship in order to heal the divide. Perhaps with time, their position may soften. Perhaps not. Either way, it's not your call.
Sorry. :-(
88
I don't quite see how writing publicly about your twins' lack of compassion for Jeffrey will help them love him better. You ask whether you're "asking too much of the twins," but that question feels disingenuous after you've described your many disappointments in them -- with their "detached kindness"; their lack of "joy" in accepting "familial duty"; their "grudging" acceptance of their responsibility.
Your essay seems like an effort to shame them into behaving more lovingly towards their brother. Were I one of the twins, I would feel like cutting off ties with my mother. I hope your twins are more forgiving.
111
Elizabeth: I've never met you, but we are kindred spirits -- I have a 15 year old son with autism, and a 12 year old daughter. We have a Special Needs Trust. But what will happen to my son after his father and I are dead is my biggest fear. I am horrified at the content of these comments. How foolish of me -- I should have known better than to read Internet comments. I am sure the commenters' vitriol would be aimed at me if I had the courage to write such an honest essay about what it is like to live with autism. Best wishes and good luck to you.
27
It's easy to tell yourself this is just "Internet vitriol." But lots of people writing here, myself included, have heaps of experience with such situations, and we aren't all heartless monsters. We KNOW what this family is experiencing. Perhaps it IS good sometimes to hear what people say in "Internet comments" without making other people who probably are not so different from you, or your family, into boogy men.
26
You say your son's future is your "biggest fear," Beth. Apparently, your daughter doesn't count as much. Does she know where she stands?
19
What Internet vitriol? The author ended her essay by asking readers whether she is expecting too much of her twins. We are telling her. Most of us believe the answer is yes, this is far too great a burden.
To potentially be financially and emotionally responsible at a young age for a disabled person is an awesome mandate, but anyone at any age who's been responsible for a family member incapacitated by mental or physical problems understands how draining this is. For some, it's tolerable because of a lifelong, loving relationship, as with a parent, but not everyone has had that relationship.
Despite having doubts about parents who continue pregnancies that clearly will produce severely disabled children, part of me has admired them. But I never thought that the parents would insist on passing on that burden to their other children after they die. Isn't it enough that unless a family is wealthy, the disabled child consumes most of the time, attention, and financial resources?
It would be wonderful if the twins decided to be fully involved in Jeffrey's life. But that has to be a free choice. I could not blame them if they kept their distance.
And people who tell people who have a huge, exhausting responsibility that it's a lesson in compassion and patience should be slapped.
21
Four lives completely distorted to look after one life.
50
Insightful article. However; you are being terribly unfair to all of your children.
44
I am not religious and don't believe in the afterlife but if we are to be judged it will be on how we treated those in our lives who were weaker than us. those who suggest that the twins should have no responsibility for their brother are selfish and callous.
8
The thing is, most people are not really talking about what responsibility the twins should have for their brother. The real topic is the relationship the twins have had with their parents, and how it influences this situation - not in a good way.
17
Family and various hospital staffs attempted to lay the responsibility for my paranoid schizophrenic father on my shoulders. I ran away. My life was my first priority.
Would you suggest, Jim, that a couple who has a child who will require a caregiver go ahead and have more children so that the needy one can have guardians? Would that be a good idea?
17
"Would you suggest, Jim, that a couple who has a child who will require a caregiver go ahead and have more children so that the needy one can have guardians? Would that be a good idea?" I actually know a family who did that. I found it rather appalling at the time, but to be fair, they are grown now, and the one who was born in order to help a sibling with the care of another sibling seems to be okay with the situation, from what I can tell. I do not know if they TOLD the child this was the reason she was conceived - but they certainly told a lot of other people.
Everyone criticizing the author without having been in her shoes: stop. You don’t know what you’re talking about, and you’re being cruel and judgmental.
Is the author handling it the right way? Trying to balance her responsibilities to her children “properly”? Unless you know her, and you know all her kids, you have no right to judge that.
Of course she can’t “make” her typically-developed children take care of their brother. But it’s natural for parents to worry intensely about who will care for a disabled child after the parents are gone. And it’s natural to hope that someone will feel anything close to the same level of care and responsibility that a parent has. It’s certainly not “fair” to the siblings. But nothing about a profoundly disabled family member is “fair.” The siblings might step up, they might not, that’s their choice. But the author is trying to do what she can for her whole family. And I personally sympathize.
19
As a mother of a severely disabled child, I too sympathize. However, guilt-tripping a couple of 23-year-olds in a national newspaper is not the way to teach the compassion she so desperately wants them to find.
There’s nothing “fair” about having a family member with special needs. But she could give the kids some breathing room in their 20s.
63
As one who has lived a similar experience I say please do not burden your children with this. My younger brother was severely mentally ill and recently passed away at age 57. My mother is still alive and tried to care for him but I was involved in much of his care. It was a terrible burden while having a career and family of my own. Don’t leave your children with a lifetime of caring for their brother.
43
This is a very hard challenge and one that Ms Choi and her husband and younger children are managing well and with compassion. It is an option that my wife and I did not have with our now 34 year old autistic son who is an only child. We have done our best by him and he has been fortunate in the support systems he can draw on in Maryland but I know how fragile it all is and I worry that it could all so easily come apart when we are gone.
15
I do feel it is too much to ask of the twins, especially right now before they have a family of their own. I've seen the resentment this has caused in other families. Were I one of the twins, I'd say "fine Mum," but when the time came, I wouldn't feel bound to do what I'd promised. It would depend on my circumstances.
27
Passing Jeffrey's care on to twins is totally unfair to the twins. They are, hopefully, going to have their own families to care for . The writer says that she and her husband are in their 50s - they still have time to make arrangements for Jeffrey's care that does not require dependency on the twins. The twins do not deserve this type of inheritance.
88
I am surprised at the level of anger directed at this mother. The point of the article is to express the conflicting emotions related to long-term planning for the care of a dependant child.
The mother recognises the negative impacts of having a disabled brother and does not want to make the siblings responsible. She is trying to have the financial resources in place, but the care is expensive and may need to continue for a long time. There is no guarantee that investments will not have setbacks. She simply does not have full control over her son's future.
In the end, there needs to be someone to answer phone calls from care homes and to make the decisions for the brother's care. It is not a burden she wanted for her young family nor is it a burden she wants to pass on to the other children. It is a reality she and many other of our neighbors deal with in one form or another.
Many commenters are angry with her for asking or preparing the siblings to help. They will be the ones left to deal with finances and to deal with decisions. It is reality. Perhaps the article can build an awareness of issues that families face and make us more responsive to the burdens of people we encounter.
58
She is not asking. She is informing.
21
When a child is born with a serious disability it is inevitable that the other children will be effected, there will be burdens to bear and there may also be strengths gained. The parents can shift that balance slightly, but cannot undo the birth of the child or eliminate the pain felt by the younger children.
In my generation boys like Jeffrey were institutionalized, and parents and siblings tried their best to "forget" them. They were never forgotten and the cost of abandoning a child wore heavily on both the parents and siblings. A mother worn down by the guilt and grief of abandoning her child has little left to offer her other children.
My heart goes out to the younger twins who have struggled with their brother's disability, and must carry the emotional weight of responsibility for his future care. However, it sounds like they had a fairly normal childhood and are now thriving. Anyone who would criticize the parents' choices or pick over their words, should consider first whether they have ever faced the heartbreakingly difficult choices faced by this family.
51
They would be much better off to get a plan that will take care of their son without the burden of this on their children. I don't believe it to be fair or right, unless they really want to do it which I bet they don't.
33
And so your suggestions for this alternative “plan that will take care of their son” are...? I’m hearing crickets. If this was a simple situation, the solutions would be simple. But clearly, they aren’t. In this country, we have little concept of “community.” That is one reason why these parents and their children are in this situation. Have some compassion.
7
Heart wrenching story.I am certainly not an expert but I taught autistic children,3-5 years old,back in the 70's.Autism comes at many levels ,Jeffrey sounds as though he is sadly one of the most extreme.No judgement here,it is extremely difficult to care for a child with severe autism. I only had the children from 9-3 Mon-Fri and we only had 5 kids and there were 2 of us and it was exhausting.I don't know if keeping Jeffrey at home was the right decision but I do know that he should NOT be the twins burden.The parents need to provide financial care for ALL of Jeffrey's needs for the rest of his life and only ask of the twins LOVE for their brother.
41
Unlike a parent, siblings have no caretaking responsibilities for each other (perhaps they have other responsibilities). I would never dream of, nor expect, my brother to care for me if I became disabled (and I’m pretty sure he wouldn’t, and he would say the same of me, I think). But it is a problem. Whose responsibility is it to care for those adults disabled from birth? Society’s, really, I think. To say siblings should have more responsibility than the public at large for their disabled brothers and sisters makes about as much moral sense as sending the kids along to prison when their parents commit a crime. The siblings had no choice in the matter,they are just randomly more proximate to the problem.
49
The author writes : "[the doctor said] we needed to consider institutionalizing him. Dan and I immediately dismissed the suggestion."
This is surprising to me. They never considered the one solution that would have possibly given *all* their children the best growing environment.
No reasons are given so we are left to speculate. Did they feel the institution would not care well for Jefferey? Did they feel they could do better? Or was it more about their desires as parents to care for him personally and not feel like they were abandoning him? Sadly we don't know, but I feel like that answer is necessary to really understand the situation.
Unsurprisingly the other great absent of the discussion is the State. Reading the article I feel like the parents consider this a purely familial problem that must be dealt with at the family level while I think it is a societal one that must be dealt with at the societal level. Letting individual families take care of these difficult situations on their own and expecting them to cope on their own is the real issue here.
62
Elizabeth, You have done a remarkable job. Many of the comments show the readers' inability to know what you have done to raise your three children. Please forgive them. I hope, and believe, Nick and Grace will step up to the plate when the time comes for them to oversee their brother's care. Right now, they are looking at all the possibilities life is presenting to them. It is an exciting time. Your love has been passed on to all three. Wishing Jeffery my best. It sounds like he has made excellent progress and, with your oversight, this will continue for many years to come.
27
The extent of siblings' obligations to care for a disabled sibling after their parents are gone is a wrenching question. To those who feel strongly that the siblings must take up the burden (and burden it is, no matter how much you may love someone): would your analysis change if the disability were diagnosed early enough in the pregnancy to make termination an option? Are siblings obligated to shoulder the consequences of their parents' concious choice?
22
The author raises difficult ethical and moral questions, and the commenters present a spectrum of advice and observations.
On the one hand are those which take a very detached and brusque attitude toward Jeffrey. They betray an anguished but still visible view toward the infirm and burdensome: if we must care for these imperfect human beings, better to put them into a place where they do not impact others. Unspoken are the more extreme views.
In contrast are the equally pained admissions that life is difficult and contains suffering, often in quantities that are unbearable and lead some to question what rational justification can derive from suffering. Although not specifically addressed, other than the grocery encounter, it leads many to eschew faith as illogical (a good God would banish suffering).
The honesty and vulnerability of the author is so genuine, it is a life lesson for all of us. We don’t often like our circumstances. Down syndrome fetuses are aborted in alarming numbers. And we will not relent until we identify cures or means to eliminate both terrible maladies and things that are less so. The question is whether we are up to that task as human beings.
How we, and Jeffrey’s siblings, address such challenges is very divisive. It speaks to our notions of the meaning of life. And it reveals our sense of fairness and charity.
I applaud the author’s courage. I stand not in judgment but in contemplation.
31
My sister and brother in law allowed their developmentally disabled daughter to abuse her younger sister. And yes, it was abuse, even though our older niece was not fully capable of understanding that her pinches, punches, scratches, screams, etc., were, in fact, abuse. Jeffrey, unwittingly, abused his siblings. Just because he had diminished capacity to understand what he was doing didn’t make the twins feel any less hurt and bullied.
Like the writer, my sister and her husband made my older niece and her needs the emotional and practical center of the family. My other niece was a distant second, as the twins clearly are in the writers’ hierarchy of importance. My sister and her husband love their younger daughter, as I have no doubt the writer loves her twins. But the love of the other siblings cannot compete with the obsession with the disabled child, now in her mid-30s.
Our extended family helps hugely with both our nieces, but we literally have had to be the younger niece’s mothers and fathers. She now has children. We tell her, your responsibility is to them and your husband, first and foremost. I’ll give my sister credit for this: She’s never asked her daughter to take on her sister after she and her husband are gone. Even my sister’s and brother in law’s obsession doesn’t go that far. Our disabled niece, who we all deeply love, knows she will stay in a group home and that the state will take care of her when her parents are gone.
70
Niece will still need an advocate
3
We actually understand the system. But thank you for pointing that out. It hadn’t occurred to any of us, not a single one of the many adults involved. Especially the lawyers. It never occurred to them either.
3
"state will take care of her" - I'm guessing you don't live in the U.S.? Or any of the poorer or even more "austerity-driven" countries around the world. Oh, wait, you are in Illinois, which I believe has been famous for budget problems and corruption. The ability and willingness to avert one's eyes from the truth of these situations is limitless. It seems most readers don't think any family members have any obligation to each other, except the ones (parents) who the letter writers think short-changed them. Where is the meaning in these "normal" people's lives?
Reading this piece made me astoundingly grateful (yet again) that I had the kind of parents who allowed me to choose my own path in life, rather than trying to assign one for me. Children aren’t belongings, they’re people.
92
The story fails to highlight the real issue. Our society has failed miserably to provide the appropriate residential supports for adults with autism. I saw only one comment even noting this. Most places in the nation also provide wholly inadequate care for children who need extensive therapies to mitigate the impact of autism. The reason is money. Just ask any family on a "waiting list" for services in dozens of states. Before anyone dare challenge what I am writing, be aware. I am an expert. We have an adult son who requires 24/7 care with few basic living skills. Every person should be asking themselves what they can do to help make sure that the Choi family does not have to be torn apart by autism. I can only tell you that the knock on that door never comes.
71
As by the same criteria it has failed for many. The elderly who are poor, the mentally ill, those who have less competence to have success in our changing society. I could go on but there is not enough resources to give everyone the life we would like them to have.
12
@vulcanalex: Nope. There are resources aplenty - unfortunately they are in the hands of the many billionaires who can never have enough money, and the providing of government help is in the hands of people who think even those who are retired & on social security are "takers" who should be shaken loose from being a burden on the government.
A society is judged - rightly so - on how it treats its most vulnerable citizens. The USA right now is led by people who have compassion for the "unborn" - but once you've arrived on this planet and need help to survive, those same people say "take responsibility for yourself."
We are living in a sick, twisted, and sadly unbalanced society.
5
There probably are sufficient resources "to give everyone the life we would like them to have." In today's issue of the N Y Times is an article about the rise of poverty and deprivation in Great Britain brought on by eight years of austerity following the 2008 financial crisis. This in turn was brought on by bankers, yet today the Conservative (yes, wouldn't you know it?) government continues to bolster this class by reducing their corporate taxes and other obligations, sticking it as always to the poor and disadvantaged. The article draws a parallel with what is occurring today in the USA; have you not observed the Republican Congress weakening at the behest of the moneyed class, the legislation put in place to control banking investment excesses of the past? There are always sufficient resources; the problem is their fair and just distribution. Capitalist and rich-man ideology presumes that their class is the sole producer of wealth, thus the sole and rightful beneficiary of it. Until this ideology is overthrown, there will always be a crisis of disposable resources to assist families caring for the infirm, the ill, the disabled.
2
Once again we see that the nuclear family, smaller and smaller as people have fewer children, isn't enough. The old adage, "it takes a village" is appropriate here. Yet most of us live in within our nuclear families, without the benefit of aunts, uncles, cousins and close neighbors to spread the burdens as well as the joys.
14
These parents need to establish a trust for their older son and put someone else in charge of it -- a law firm, for instance -- rather than burdening their younger children with dealing with their older brother's needs at a time when they will be raising their own children, saving for their college needs and their own retirement. That way, when they do visit with their older brother, it can be a calm family event, not one that is fraught with competing financial needs.
107
That's the ideal scenario, but lawyers take money so resources can get used up very quickly.
2
I hope the parents separate financial obligations from emotional ones. The parents talk of life insurance that will help support Nick. But please don't put the burden of managing those payments on the twins. Their own conflicting financial needs will surely stress that task. Instead, consider a trustee arrangement, where Nick is the beneficiary of the insurance proceeds and someone (anyone but the twins) ensures the payments are made and rationed. The twins can receive benefits from a separate life insurance policy, if the parents can afford it.
The more important role for the twins, in Nick's life, will come from visits and love. No financial amount can replace that need. And the twins' generosity may grow if it does not entail financial obligation to Nick as they sustain their own homes and families.
64
I agree. I have a brother with autism, and I helped my parents but together a will that does just that--set up a trust and have someone else besides me and my other siblings manage it. I think it is in the best interests of the sibling with a disability, who is a vulnerable adult, as well as the siblings, who do not feel burdened by their vulnerable sibling as a result.
22
I can't begin to imagine the emotional dilemma that a parent of an autistic child faces in terms of making sure that that child is cared for passed their own demise. Our "normal" children have it hard enough without the burden of taking care of a siblings with a profound socially disoriented personality. Although I do know of a similar case personally, not quite as severe, but I can clearly see the burden on the sibling that I do know. This is a struggle I never faced. All I can say is that given our wealth and resources as a country we should do all we can to help care for socially non- functional children as well as adults and thus take the burden off of our "normal" children.
15
Forcing anyone to be responsible for an adult with autism is simply bad for everyone involved. Let each of the twins decide for himself or herself. Give them time to decide and promise to love them even if the answer is not what you want. If both answer no them make arrangements now. I imagine someone forced into caring for another will be filled with resentment and eventually that resentment will hurt the kind of care provided.
28
Are you asking too much of his siblings?
Most likely. Do you have trust funds established for Jeffrey's future care? Do you have a place for Jeffrey to land, to live when you are gone? No? Then you are asking too much of his siblings.
I can't imagine the difficulty parents have with balancing the needs of a child who is very much on the spectrum with the needs of the children who are not; but I cannot also imagine telling them that they own the problems. And that they will inherit the problems right about at the time when they have their own family difficulties to navigate.
One hopes Mom is putting away a lot to help care fore her oldest, and at least reduce the burden of responsibility she plans to pass on to her other kids.
45
"Are we asking too much of the twins?"
Yes. Absolutely. The eldest of my brothers needs lifelong care but our parents never presented him to us as an inherited burden or made us feel he was special and we weren't. They are gone now, but had arranged for his continuing financial needs. The rest of us love our brother, do what we can to make his life comfortable, and try to protect him. We do it because we want to, not because the 'job' was thrust upon us.
89
It is certainly understandable that the twins might harbor a lot of resentment and other negative feelings over the parents essentially allowing Jeffrey to run amok over them. I don't know how the parents thought it was appropriate to let the twins fend for themselves in a space where they should have felt safe and protected. In addition, Jeffrey should never have been permitted to give Grace's friends "inappropriately long hugs." That is outrageous and the parents are lucky these girls' parents didn't call the police.
Perhaps family counseling is required here to allow the twins to express their feelings over how they were treated. If they can get beyond their anger and resentment towards Jeffrey and their parents, they would be willing to take care of him later in life. Right now, I don't see them doing more than the barest minimum for him and that will be done grudgingly.
41
You don't say that you have any experience parenting a child with autism, but your comment certainly lacks any understanding of what an immense physical and psychological struggle a family has to go through to parent a child with autism and to balance parenting with siblings who do not. With your statements, I must say that I can't imagine what gives you the right to so condemn these courageous parents who not only did the best they could, but obviously raised three successful citizens of the world. Good grief, walk a mile before you sling such ignorant arrows.
4
Good lord. Having lived Nick and Grace's kind of life, I am struggling to write a coherent response. The bit where "they grew old enough to protect themselves" says it all - why were two young children supposed to protect themselves? Why was no one else protecting them? I could say a lot more, but really only want to put this one thing out there - parents, if you have a special needs child, I'm very sorry and of course you're struggling, but please do what you can to not let them abuse their siblings. Abuse is still abuse, even if the abusers's mental state is clouded, or they "mean well."
370
Ann, Nick and Grace were carefully watched by their parents until they reached the age they could interact with their brother. Your comment shows no understanding of what this remarkable family has been through raising an autistic son. Besides, parents always need to supervise young children with all older children until they grow "old enough to protect themselves". You have no idea how Jeffery sees the world...how smart he may be...how trapped he may feel. Elizabeth loves all three of her children equally. She has done the best she could do. It my estimation, I would put her insight and efforts as remarkable.
24
@Pat Owen, do you personally know this family? I'm bewildered how you can know all this. If you do, you are privy to information not appearing in the article. Maybe it's different in real life, but here the author indeed portrays Jeffrey as abusive to his siblings, period.Yes, it's a difficult situation, but yes Jeffrey is abusive. Doesn't matter that they all have good intentions.
4
You make a lot of assumptions about what protection the twins actually received.
3
I have a 23yo with Down Syndrome and autism and a 20 year old college student, two boys. My disabled son is also awfully tough and like yours is in a home, which = winnng the lottery but which also indicates the degree to which he cam be disruptive. We have told our younger son that it will never be his responsibility to care for his brother. I want him to move to Australia if that is what he wants in life. For many years, especially in middle school, he was embarrassed by his brother but now he loves him dearly and probably will always be involved in his life. I think that maybe you made the wrong call - but who knows and i only wish all of you the very best.
107
This comments section is just an amazing illustration of how self-centered and selfish Americans have become. Where did the concept of a life free of responsibility or obligation to one’s family come from? Every life has burdens, some more than others. But to believe that any expectation put on the twins is somehow cruel and unusual speaks volumes about how damaged the idea of family is.
46
I have to respectfully disagree with you. I have watched my 62 year old cousin care for her autistic son for 28 years. Her dedication to her son - an only child - has destroyed her marriage, ruined her health, and has, in the last few years, led to a serious problem with alcohol. She relentlessly pursued every possible form of aid from the school district, the county and the state, but once her son graduated from high school, there was precious little help available. It's one thing for a parent to dedicate her or his life to the care of an autistic child, but siblings have their own lives to live, and eventually their own children to raise. They can not and must not be expected to show the dedication and self sacrifice that most parents of autistic children experience. Please, make what arrangements you can for your autistic son, but let your twins decide for themselves just how large or small a portion of their lives they are willing to dedicate to their brother and respect their decisions.
68
You'd be exactly right, except that acceptance of burdens in a family isn't very well achieved by fiat - it's achieved by creating a loving home where everyone feels cared for. If you allow one sibling to torment and destroy the safety and security of the others, you haven't really done that, and you can't then expect them to willingly take on the burden of that sibling later. They may choose to, and we may agree that it would probably be the right choice - the argument is whether the parents' way of achieving this was right - I think it was not, it created justifiable resentments and probably deep-seated anger and guilt.
11
Now that we have birth control, and don’t need large numbers of children to work the farm or survive past the terrible diseases of childhood, we recognize that people should have few children, cherish each one, and not breed hordes of children as if they were spare parts or personal servants. It looks like these parents bred a couple of personal servants for their darling. That is the terrible part of this.
4
Stunning selfishness. You took away your children's happy childhoods and now are guilting them into accepting a burden they had no role in creating. I feel for Nick and Grace.
How can you put this on their shoulders? I marvel at their continuing a friendly relationship with you, your husband, and possibly Jeffrey himself.
96
The parents did not take away the children's happy childhood, autism did. Autism stole the parents' dream of 3 happy, productive children. Autism stole the happy childhood of 3 children, not just the twins. Autism stole the dream of having a happy family, not the parents, not the mother.
Having a child with low functioning autism is a devastating hand to be dealt in life. The parents did not ask for an autistic child anymore than the twins asked for an autistic brother.
As a society, we don't take care of our adult autistic population and it's a problem that will grow. The services for autistic children and adults are for families that have great insurance and can afford it. The services are for the elite, not the many. The really great services and education, the diagnosis changing services and education, are for the lucky!
Before you judge, take a walk in their shoes. If there are no manuals for raising children, there are certainly are no manuals for autistic children, especially for children that are adults now. If we all feel the twins should not be responsible for their brother, then we, as a society, needs to make room for these adults. We treat animals with more care and concern than what is shown in the comments of this article.
154
@Smith: Sorry, but these parents DECIDED to keep the autistic child at home, even when (realistically) the demands of raising twins would present huge requirements. The parents subjected the two younger children to a childhood that they didn't need to have. And traumatizing the twins did nothing to mitigate the needs or behavior of the autistic son. I believe the twins deserved better - and I also believe that the parents did the best they could at the time.
3
Thank you.
I have very mixed feelings about this...and I have no comparable situation in my own circle of family and friends. But, bottom line, Jeffrey didn't ask for his disability and families generally try to take care of their loved ones. It seems that the parents are doing everything possible to prepare for their passing and Jeffrey 's care. Surely two adult siblings can find it in their hearts to share oversight when th e parents are gone.
21
You had Jeffrey, not The Twins. Saddling them with your misplaced sense of guilt and failure to set up and finance adequate perpetual care for him, is not something The Twins clearly asked for or deserve. If they want to participate voluntarily, fine. But, the relentless reminder that they will always have to take care of Jeffrey is cruel. As described, they have lives and future plans of their own to finance and pursue. Sure, it’s tough to wind up with a kid who needs lifelong care. But, you have done better than most in putting together resources and you should be commended for that. But, that’s where it should stop. Been there.
83
I think your plan is the right one, and those who criticize it underestimate the healing power of taking care of another. No one is born into the world without obligation, or without need. We simply must understand and help each other.
28
The difficulty is that "we expect you to do this" isn't a plan. It's a hope, it's an expectation, but what happens when the twins say, "No"? It sounds as though she and her husband have not planned for that (very probable) eventuality.
11
My dad and his siblings were designated care givers for a sister with Down syndrome, I'm one of several guardians for a cousin with a disability. My own children will be back-up guardians to a niece of mine (cousin of theirs) whose sister has Down syndrome.
We all grew up knowing this. Rather than avoiding discussion and hoping for the best, our family has taken the Choi's approach - talking often about what this means for each of us. In turn, we've had a strong voice in making sure arrangements suit our lives.
For my niece, this has also meant family involvement in siblings ("sibs") networks, summer camps and friendships with children who are also in the same situation. The goal is to surround her with support for the portions of her childhood that are atypical as a result of her sister's disability, but also give her a strong network of peers as she moves into adulthood.
Sibling and caregiver networks and support groups exist across the country, and help with the issues brought up by this piece. If you're facing this situation, you're not alone and there are people who will help ease the work and the worry.
Out of necessity, pieces like this focus on the challenges of integrating disability into family life. But, the family described here sounds pretty successful to me - school performances, friendships, slumber parties and lots of thoughtful discussion between two parents who care deeply about all of their kids.
Well done, Elizabeth, and thanks for sharing.
54
Your younger children absolutely should not be expected to be responsible for theid autistic older brother when you are gone. Make a plan now for Jeffrey to be institutionalized once you are unable to care for him.
58
Have you even read the article?! He is "institutionalized" already. But as you will find out when you having aging parents in a nursing home or something similar, you can't chuck the responsibility at the door. Even the best caregivers will always have to be monitored. To say nothing of a little loving kindness toward a lonely person...
4
This is worst most tragic, awful piece of writing I've read in a really long time, and last night I read an article about a man in Chicago who lost ten years of his life in prison at the hands of a corrupt police officer who framed hundreds of african americans for crimes they didn't commit. Oh my god, where to even begin. Well, the parents might have begun with not framing their autistic sons life as a burden for all to bear. And I'm sorry, is no one living in a state with qualified occupational therapists and speech language therapists to help autistics navigate the neurotypicals around them? oh, right I am. Here in Maine. Wow. I'm actually blown away by the myopic view of family and life displayed here. The parents are victims of their own making, with a stunning lack of understanding of autistics, their worth, and their basic value as human beings.
20
Seriously? Do you know how hard it is to access those services? How expensive they are? How autistic youth age out of services when they reach 22? How long the waiting lists are for therapy? Please. I am personally aware of three families with children with autism who have struggled mightily, fought the system for years, begged, pleaded and demanded services for their children, to no, or very belated avail. It's a tragedy that our society has created by the increasingly unequal distribution of wealth and the lack of national medical care.
5
Honestly, the guilt trip this mother is placing on her twins is cruel. It is not the twins problem, they didn't sign up for this. An autistic kid should not destroy their siblings' lives.
96
Destroy? How is taking responsibility for a family member destroying anything? How self-centered has this generation become to think anyone can sail through life without responsibility or obligations.
28
I don't think anyone thinks people should sail through life without responsibility or obligations. You don't offer a reason why Jeffrey should be these young adults' primary responsibility. I suspect they will take on other normal, appropriate and admirable responsibilities in their adult lives - for instance, to their own children, not to mention partners, jobs, or other causes. And no one has even mentioned the parents themselves - at some point THEY too may need Nick and Grace's help. Nick and Grace have a good bit on their plates and we have no reason to think ill of Nick or Grace.
5
Unless you have shouldered a similar burden, please don’t judge those who have.
3
You have created the relationship your twins have with their brother. It appears he got the lion's share in everything. They are not responsible for him.
80
The bit about "engraving this on their hearts" is quite off putting. Really can't get past that. That's one heavy guilt trip.
187
you did not take hostages, you had children, whose life belongs to them. Your disabled chid is not their albatross and the biggest kindness you can do for them, is to have all his needs met, so they can have a relationship with them, and possibly, with you.
113
I hate the artwork used to promote this article. It portrays Jeffrey as a Kaiju destroying his siblings' lives like Godzilla rampaging through Tokyo. It's a disservice to Autistic people everywhere. We are NOT monsters! We are human beings, with thoughts, feelings, and dreams of our own, even if some of us have trouble communicating that to others. And by others, I mean neurotypicals who can't or, more likely, won't recognize that there are other ways of seeing the world than their own. I have Aspergers' syndrome, or as it's now referred to, high-functioning Autism. I graduated from university, with no special services. I am a married mother, with a little boy of my own. I live an almost-normal life, and would live a completely normal one, if employers would recognize that my social differences do not mean I'm incapable of working in anything better than minimum wage grunt work. My point is, "disabled" people are not a burden to be pawned off on family members like an unwanted houseplant. We are people, and deserve to be treated as such. What are Jeffrey's own plans and ideas for his future? Maybe they should be taken into account.
37
carol, I'm somewhat surprised by your response (I've read and appreciated many of your comments in the past). I thought VioletLight spoke rather specifically (and eloquently) first about the illustration (which *did* present the elder sibling in a less than flattering light), and of the fact that there is clearly a broad spectrum of abilities within the autistic community, and we'd do well to remember that.
Though I realize we read each other's posts from our own experiences and personalities, I didn't feel that VL had no sympathy for Nick and Grace; just that she envisioned more autonomy and empathy for Jeffrey. Indeed, she was against the latter being "pawned off" on family members.
Reading this article, and all the comments here, I admit to feeling sympathetic to all of you. These are highly freighted issues, and the fact that we may have more options at hand, doesn't make the family decision-making any easier.
If I've misread your comment, apologies.
12
This is a pretty ugly comment, Carol.
2
He abused his siblings. The illustration reflects that.
15
From what I've read I surmise that both of you, as parents, were more concerned with anything and everything Jeffrey than with Nick and Grace and Nick and Grace know that. They really don't want to hear more of the same because they fully comprehend that their lives have been sold to Jeffrey's well-being. They understand that right now there's a lull and that it will not last. How do I know this?
My mother was born with a disabling deformity. Her parents made each of their other 4 children feel responsible for her. In turn, my mother had no brain disability and she became pretty much a master a manipulation. But everyone does what they need to do in order to survive. It's the driving force of life after all is said and done.
I was a freak event. My mother was never expected to become pregnant. It was assumed. I was immediately charged with the responsibility of taking care of my mother. Only a slave will know what life is like at age 5 to assume care of an intelligent adult who cannot care for themself. So here's my opinion on your long confused labor of love.
Have you read or seen the movie "Never Let Me Go"? If not, you should. That is exactly like what it feels like when your birth's only goal was to enable benefit someone else's life and that person didn't care anything, as in zero, about you.
I understand autism is a wall. That the patient may care. But to the sibling who was always born to be the keeper it feels like a denial of their right to be a full human.
130
I can relate, Susannah from France. My mother did not have a deformity, but I was expected to be her salvation in life from the moment I was born, and it really didn't turn out too well.
16
Am I to believe that when Jeffrey hugged his younger siblings until they couldn't breathe you told them this was… a good thing? Why did Grace have to complain that Jeffrey was hugging her friends in an inappropriate manner? Shouldn't you, as the parent, have noticed this and put an end to it?
Perhaps Nick and Grace are not showing a lot of compassion in this situation because not a lot was shown to them when they were little.
Nick and Grace – I applaud you for finding boundaries – I can see that you are still going to need them. Yes, your parents were young and overwhelmed – but accepting this "inheritance" is a choice!
126
I do not feel it is fair for you and your husband to expect this of your twins. From what you have written it appears the only connection they have with your older son is blood. This is the burden of being a parent. It should not be the burden of a child. their entire childhood seems to have been overshadowed by their older brother.
73
Given the episodes that the twins endured while growing up, (and I’m certain there are more serious ones) that the twins come home for holidays and are still speaking with their parents is nothing short of a miracle. The author is very fortunate that they have grown to be “…busy young adults with romantic relationships and promising careers.” I have personally known families where siblings of autistic people had cut off all relationships with the family, had difficulty findng their own places in the world, or turned to drugs. In the parlance of the phenomenon of downsizing as we get older, if your family doesn't want your stuff when you're alive; they certainly won't want it when you're dead. Take responsibility for your autistic son and don't leave him as a burden for his siblings. It's not fair to him or them.
91
I am impressed with Choi's clear-sightedness about her son. Most parents set unrealistic expectations about their children.
I especially liked this insight from her:
At 23 "they treat Jeffrey with detached kindness rather than the resentment of the past."
Which is exactly all one can hope for in one's adult children. They have their own lives. It isnt the Hallmark Channel fictional version of this story and thank goodness the author knows that the reality is that her twins dont feel a mission to be caretakers of their older brother.
19
While I sympathize with your predicament, you cannot take your twins’ autonomy for their future away, for what you decide is their “compassionate duty”. I have an older sister who is not autistic but suffers multiple disabling mental diseases, and I also have a twin. We grew up with our sister terrorizing us and abusing us because she was not able to control her emotions, and my parents would frequently make excuses on her behalf while ignoring our pain and the fact that our safety always came second to the emotions of our sibling. Most likely, your twins already feel second best and have spent their adult hood trying to escape from a very damaging dynamic. Do not guilt them for not being interested in providing care for someone who made their childhood feel unsafe. You are still young and you have time to reach out to community resources and programs that can help you ensure he will be looked after when you are gone. What was your plan with him if you never had other children?
276
Great question. It seems to me that the other children *were* the entirety of the plan. Like those people who have another kid to be an organ donor to their original kid.
5
As she states in the article she was pregnant with the twins when they found out about his autism, so it's not really fair to ask what their plan was if they hadn't had the other children.
5
A beautiful, thoughtful, and emotional look at one of life's existentail quandaries. Thank you for your essay.
11
I highly recommend the book , “The Normal One” by Jeanne Safer. In it, she explores what it feels like to be the healthy younger sibling of a damaged older brother. I think these twins are in a very difficult position. It is very important that their parents understand that their needs for their older son’s care may be in conflict with the twins’ needs to have their own lives. An empathic understanding of this conflict is a necessary part of any conversation about the future.
48
I cannot say it is easy to deal with family, but it can help you grow. I don't understand how people think that they can avoid responsibilities. It is childish.
You can have an irresponsible father, as I did. However, I did take care of him when he needed. I agree it helped I had a mother that was supportive and helped to the point of divorcing my dad to be more able to take care of us. Besides, I had many other people who helped me cope with my own burdens: friends and family were always there. Why should I not take my own responsibilities when it was the time?
Maybe it was easy to do because it was like paying it forward. However, if we never try to soft the burden of others, when will this world be a better place to live? We have to be wise to help, indeed, but not helping is only cultivating and amplifying our own dehumanization.
10
I'll begin by stating I cannot imagine the strength and energy you have all expended and I hope you take a rightful pride in providing the care you have for Jeffrey. However I do agree with many of the posters that while it is laudable to hope that your other children will assist in the care and financial support of Jeffrey, it is not fair to them. They have no inherent right to a financial windfall at your passing and I would seriously consider setting a trust for Jeffrey with your life insurance being set into it. It is your money and your right to decide how it is used. However, they made no decision to have a brother, did not agree to provide for him, and should not be expected to do so. They may, and hopefully will, help him, but it is not a fair demand or request to place on your children to care for another. Rightly or wrongly there is often significant resentment and a sense of burden that the children will feel when asked to help care for a sibling for the entirety of their lives. To understand my perspective, I am a son who has a severely schizophrenic sister. She has attacked my parents, and me, and complicated all our lives hugely despite copious amounts of effort from both my parents and myself. I fully expect my parent's savings to potentially be but into trust for the care of my sister after they die, but in no way do I consider it my responsibility to care for someone simply due to blood relationship. While I may offer help, it will not be mandated of me.
123
It'd be wise for mom and dad to have a talk with their twins to discuss everything about Jeffrey's care. Mom and dad should also discuss with the twins what's in their wills and their financial plans. Make everything clear cut before hand. Get the plans down on paper so everyone knows what's what.
Revise those plans when Grace and Nick get married. Revise them again when they have kids. Help Grace and Nick to track any genetic problems they may have inherited so they can know in advance if their children will be like Jeffrey.
The persons who will be the most influential in the decision making of Grace and Nick are not in the picture yet at all. They will most likely rely upon not their parents or their future spouses to decide how to deal with Jeffrey, but their future spouses' parents. Right now, mom and dad have no idea who those future in laws will be.
17
I don't agree with "genetic tracking" for Autism, even if such a thing were possible (and I hope it never is). I have Asperger's syndrome myself, and I live independently, with my husband and young son. With proper support, there's nothing to say that Jeffrey can't have a real, fulfilling adult life. I'm limited by the information in this article, but it seems like he was never encouraged to pursue his own dreams, or even asked if he had any. Anyway, the point is, Autism is not a disease. It's a different way of seeing the world, and should not be tested for like Down's Syndrome. For high-functioning Aspies like myself, we don't suffer from our syndrome. We suffer from other people and their lack of acceptance and understanding. Our lower-functioning brothers and sisters have the same problem, and being seen as a burden by others is the worst of it.
11
Bottom line, this should be a conversation that families have. This shouldn’t be a one sided declaration. I think most siblings are conflicted about the role they want in the life of their sibling with special needs. I definitely am, and I’ve had a similar experience as the twins. You can tell your child that they must take care of their sibling, but the reality is it will be beyond your control at some point. You can’t force them to love him and care for him. In fact, doing so may push the wedge in further.
So have a conversation. What are their fears? In what ways do they connect to their brother? How can you acknowledge the difficult road that they’ve already been down? As an adult I had to figure out how to mourn for parts of my childhood and to accept that my parents chose my brother’s presence in our house over my safety. I have a lot of compassion for these parents trying to find answers for how to care for all their children. But I can still be angry and sad about what transpired.
We need space to acknowledge the complexity of the past and possible future. I’m terrified of the day I may become guardian for my brother. I love him, and I resent him. A few years ago I initiated the conversation with my family about plans and expectations. It was one of the most important conversations I’ve ever had. It’s not over, but we needed to start somewhere.
164
I grew up with a brother who has fairly severe autism and will never live on his own. He made life very hard on all of us, particularly his younger brothers. My parents gave their all in raising us. They'd often discuss his condition with us - the challenges, the things they were trying, the reality of his situation. What they never did was breath a word to suggest that he would be our "responsibility" when they were gone. Literally, they have never, ever broached the subject.
I believe that they consciously avoided this because they knew that our childhoods had already been warped and burdened by his overbearing and sometimes terrifying presence, and that loading parental expectations of never-ending care of this person on to any of us, just as we were beginning to make our way as adults, would only start the slow buildup of resentment at precisely the time of life when our maturation was leading us to be able to love him for who he was. And then, rather than love him as a brother, we'd grow to see him as a pending burden.
Or, in fewer words: I think they guessed, correctly, that we'd be more likely to care for him if they never breathed a word about our responsibility to do so.
332
I found this essay to be incredibly sad. If Jeffrey’s siblings see him as a burden, please do not leave his care decisions to them. How will they be able to truly see him for who he is and make decisions in his best interest? As a parent it is necessary to plan ahead for our children who are not be able to live without assistance and support. It’s terrifying to think of Jeffrey left vulnerable to those who may take advantage of him or the finances you worked so hard to leave for him. I have found tremendous solace in hiring a service that will administer funds as needed and manage my children’s important life decisions after I am gone. It’s lovely to think that siblings will care for one another once you are gone, but they are showing you that they are not capable. Don’t leave Jeffrey to someone who doesn’t love and cherish him. At least with an organization specializing in caring for adults with special needs, Jeffrey will be able to continue the life he knows thanks to your planning.
14
It all depends on what you mean by "take care." Clearly, they can't allow him to live with them. They deserve a normal day-to-day life. But there are other supervisory roles that they can share to ensure he continues to lead a happy, productive life. My son will monitor his brother's life and finances, but they will not live together. We are funding a trust with savings and life insurance so that there will not be a financial demand. (I highly recommend using a financial planner with experience working with special needs families.) His brother will live in a small group home setting in the same town. It isn't all or nothing. We are optimistic that they both have an opportunity for a happy life.
51
This is a heartbreaking story. Everyone in the family deserves compassion for the challenges and pain they've struggled with as a result of Jeffrey's autism. The most helpful comments here are from posters who have found a way to care for siblings with mental illness or developmental disabilities without allowing this responsibility to become too overwhelming. It's worth noting that these posters didn't have to assume care for their siblings until they were much older than the twins are now. That's likely to be the case with this family as well. I can understand the parents' concern about the possibility that they might die sooner, but worrying isn't productive. Instead, seek out advice from other parents who have faced this same situation and from financial planners with experience in this area. Beyond that, I would strongly urge the parents to let their twins have what most young people their age want at this time in their lives -- the opportunity to live a little selfishly -- to put themselves first as they start to make their way in the world. Nick and Grace are already demonstrating that their hearts are softening toward Jeffrey -- they're treating him with some kindness, and, we hope, making their peace with his impact on their lives. I hope Elizabeth and Dan can recognize the forbearance that the twins have shown and have faith in them.
22
I confess I am bewildered by a lot of these comments.
It is not unreasonable for the author and her husband to expect their two younger children to support their older brother after mom and dad are no longer able to do so. The twins are his family. And if they can't find it in their hearts to provide this support for his sake, they should do it as an ongoing tribute to their loving parents, for whom this task means so much.
I found this essay incredibly poignant, beautiful, and deeply compassionate; moving to the point of tears. Ms. Choi: thank you for writing it and sharing your private thoughts and experiences. You sound like someone who has met this staggering challenge with amazing maturity, good sense, and stamina, and a greater store of love and compassion than most of us have to give. Your children seem to me to be incredibly fortunate.
27
I have 3 twenty-something children, one of whom has autism and lives with me. He will need long term care from someone else when I am no longer on the earth. I have never told my other two children that their brother is their responsibility. I feel very sorry for these twins. What a way to destroy your relationship with your kids!
256
I'm not sure what you are asking your twins to do. It seems to me like you've set up your son in a very reasonable situation where he is as independent as he can be. What more is necessary - not living with them, certainly. Maybe you are asking them to monitor his financial well-being, or maybe that he be asked out for coffee once a month. Who knows, because you are not clear. When you are clear, it will be clear if it is too much to ask. And I dare say the twins will have a better comprehension and ability to say yes and/or no then a bunch of random strangers on the NY times.
45
Your twins are still very young.. but what stood out for me is that your family apparently needed help when all of the children were very young and it-- counseling for all concerned, babysitting for the autistic child, getting rewarded for dealing with the problem brother was not there.
In this day and age, family does seem to mean less and less....
10
No. Your twins have no responsibility to their brother. They've come 2nd their entire lives, and their lives now belong to them. The favored child may have to come 2nd in the future.
101
This column resonates painfully for me. My only sister who was two years younger than I was developed epilepsy when she was 10. Many drugs and treatments were tried but nothing controlled her frightening and dangerous almost daily seizures. The medications sedated her and she could no longer function as the normal, bright child she had been. She struggled in school and often got injured falling during a seizure. My parents fought constantly about her treatment. They were overwhelmed. My sister and I had been close but she grew to resent me for leading a normal life and acted very badly toward me. I was expected not to react, to babysit her, and to spend my time with her or to bring her with me if I was with friends. But as a young teen, I was embarrassed by her behavior which was hostile, and afraid of the seizures. My parents thought I was heartless and I felt guilty, angry and torn. I eventually went to college and went out on my own. My sister desperately wanted to also be on her own but her intellectual capacity had been diminished over time and her seizures were still uncontrolled. My parents would not hear of any kind of supervised living facility for her though I advocated it. I knew that one day she would be in my care. I dreaded it and resented it but accepted it as my unquestionable duty. Then when she was 32 she had a seizure in a swimming pool and drowned. The relief, sadness and guilt continue twenty years later.
359
Katrina,
I am so saddened by your story. I hope the day will come when you can live without guilt. You were in such a difficult situation. Thank you for sharing.
96
I am so sorry. This burden NEVER should have been placed on you. You were a child yourself and there should have been, ideally, the same level of concern for your life as your sisters.
64
Please make an effort to overcome the guilt. Your parents should not have made your sister your responsibility and worse yet, to have expected you to babysit, not react and take her along with you on outings with your friends. I am surprised your resentment of them is not greater than any guilt you feel about your sister's death.
20
He’ll probably move in with one of them.
How is sharing this personal story in which you call two of your children selfish and reveal to the world that you did not protect them in childhood helpful or kind to any of your children?
276
They say that confession is good for the soul
2
Um, she never called them "selfish."
I too had a disabled brother whose various problems made my childhood, and that of my siblings, a living nightmare. When I grew up I wanted nothing to do with him and put as much distance as I could between the two of us. No way would I have wanted anything to do with caring for him. When he died I was glad. He ruined my childhood.
76
I found your post disturbing, sad and frightening. You Blame your disabled sibling for “ruining...” your childhood. No particulars given; what was your role, your contribution to a “ruined childhood”? Only a victim? I write this as a parent of a developmentally disabled son, now diseased.
9
Thank you for your honesty.
3
Thank goodness Nick and Grace have one another. They certainly don't have very supportive parents.
191
I was thinking that, too, and also thinking of the dangers to their relationship when/if care of Jeffrey falls to them. One will inevitably take on more responsibility than the other, unless they are very careful to share the burden equally - and this could sadly damage the valuable relationship they have as siblings sharing an unusual heavy burden.
10
It is not your children's job to parent your other child when you are gone. It is your job to ensure your child will have the resources to survive once you are, if they cannot take care of themselves.
Yes, you are asking too much of your twins, and you may not like the results you get.
346
Some of these harsh commenters have never raised, lived with, or struggled with a difficult child. Judging this writer is grossly unfair, and based on selfish ignorance. There are many childrearing challenges out there, and not just autistic people. Of course the twins cannot take Jeffrey into their homes, but is it really unfair to ask, once the parents are no longer able, or gone, for them to be power of attorney for his monthly allotments, and whatever other decisions need to be made? Kindness with familial concern, even if emotionally distant, is likely superior to leaving the responsibilities to paid strangers.
I suggest watching an old movie, Rain Man, starring Dustin Hoffman that covers this issue. If family cannot show compassion to their own, and yes the role should not be overbearing, what do we expect from the government, or even charity/aid organizations?
53
I lived with a brother who had physical and emotional challenges. I remember very clearly, at seven, my parents telling me that they didn't love me any less but my brother needed more of their attention right now.
If I'd been told by my parents I had to take care of my brother after they passed away I might have moved across the world. Family doesn't mean you have to take care of each other and it doesn't mean you have to like each other. I loved my brother but I wanted nothing to do with him most of the time he was alive.
131
I agree with Rebecca. Compassion is not a life sentence.
4
How would you know what kind of parenting challenges other readers have dealt with?
12
Are we asking too much of the twins?
Yes, a resounding yes.
Parents can hope that siblings will take care of one another when they are no longer around. Parents can hope that they helped their kids create a sibling relationship in which they all want the best for one another and will try to help his/her siblings have the best life possible. But that's all that it is--you hope you did everything right but you can't expect other people to live the life you chose for them. The twins didn't bring Jeffrey into this world, that responsibility lies solely with the parents.
129
I'm the sibling of someone mild developmental issues and moderate physical health issues as well. I was always raised with the idea that she would be my responsibility...and that she was the "special" one. It is a very difficult concept to be asked to love and support a sister who seems to get the best of your parents attention...but it's possible to grow into the role. And now that my parents are gone and we are in our 50's I do what I can to oversee her care and do what I can to provide outings and entertainment.
For the author though, the lesson seems to be spacing kids out a bit more. I know that 2-3 years is thought of as the ideal, especially for women who want to eventually resume their career but at least waiting 3 1/2-4 years would catch a great deal more of these developental issues that just don't show up at all before the age of 2. As parents give yourself time to get a better idea of what your child might become before getting in deeper with your next baby.
11
This story is but one of thousands of similar narratives that are so rarely shared in the public sphere. I agree with Good Reason that this scenario is not either/or, and I speak from experience: my older sister was institutionalized with mental illness as a teenager, and she is now 67. My parents could not afford to pay for private care, but they supplemented, as they were able to, the government assistance that provided Kathy with housing, food, and medical care. They taught us by example how to support and contribute to Kathy's life and happiness: buying shoes and overcoats, etc. visiting her, calling her regularly, demonstrating with many small gestures that she was still part of the family. My two other siblings and I have been doing our best for the last twenty years since our father died. Sometimes she needs us to advocate for her, financially or medically, and sometimes we pay for things that fall outside of her benefits. Each of us have had personal circumstances that have limited our commitments to her. None of us have ever been able to devote ourselves or our finances to her as my father did during all the years after my mother died. He had no means to create a trust or any other long-term financial cushion, the reality of many families who live in fragile economic circumstances for a host of reasons. We do what we can when we can for Kathy, with limited financial resources; but we each draw every day from the bank of love and loyalty that my parents built for us.
164
Your parents raised you well. I admire how you and your siblings have worked with love in such difficult situation.
The approach you have taken is balanced and responsible, without being unwisely self-sacrificing. Its the balance which has allowed you to do it without resentment . . .
10
That couldn't have been an easy decision for your parents to make. I really appreciated what you said regarding doing little things so she can still feel like part of the family. That you all have also financially contributed out of love for her and your father, not guilt, is beautiful. You can't force family. I'm very glad your parents made the difficult choices they did so you and your siblings could bond in some way with Kathy. That's love.
5
I appreciate your kind comment very much. Courtney. There are so many people in similar situations who do as much and more than we do. I would add to my original narrative to emphasize that our relationships with Kathy are not one way — she enriches our lives in many ways, and we get to share in the peace and joy she has found after many years of struggle.
My wife and I are in the same situation with our oldest who has autism at 17 and the youngest at 15. It is a very difficult issue to deal with. On the one hand one would not want to saddle the only sibling with this 24/7 responsibility. That child as a young adult and in other life stages needs freedom to have fun, to be carefree, build a career, start a family, etc. On the other hand, who else can you trust? If there is a larger, extended family I believe leveraging those family members is the child's age range (cousins) is a great route. Dreading this as the author is.
15
This is not an either/or scenario. There are a range of things that the twins could possibly do to help their brother, and they will decide which of those things they feel good about doing. Unlike some commentators here that see no obligation at all, and unlike others who see full obligation, I think the reality is that there will be a middle ground. The twins will do what they can do without endangering themselves and without destroying the future of their own children. I am sure that is what the parents would want, and all they could expect.
63
Although my sympathy is tremendous for all involved here, I am emphatically against forcing the siblings, simply by virtue of their relationship, into caring for an autistic brother. Trying to force them to take care of their brother by familial guilt, "duty," or obligation is a sin of the highest order.
I note another reader castigates all of us for being cold and unfeeling towards family. I would remind that reader that many of us have suffered terribly in the clutches of family. We are all well within our rights to refuse that "duty." Many of us have created our own families, from others who respect and love us without judgment, abuse, and guilt.
204
"Are we asking too much of the twins? " Yes, you are. It is an unfair burden to put on them (what if their own lives are complicated, or they want to move away, what if they just don't want to take on a responsibility that is not theirs?). You are also doing Jeffrey a disservice by making him reliant on his siblings to handle money meant for him. Have the money put in a trust and handled by a professional with a fiduciary duty.
383
As the sister of a psychotic sibling, I am so pained by this response. As a family, we have researched and tried the "put the money in a trust" solution. Although we are an extended family in the top 5-10% of income and wealth, trust fees are not affordable. A recent family fight erupted on whether eventual life in a mobile home was morally ok if other siblings live much better. The comment I'm replying to does reflect the U.S. custom of "everyone for themselves." But we almost all face these issues at some point, and we may be the one needing help at some point, given gutting of social supports of all kinds. I don't have any answers, but nobody else should assume they do, either.
22
Absolutely Barbara, we have worked very hard to help our son, who is five years younger than our daughter with severe autism, to not feel responsible for her needs. He is just 16 years old now, but the fact is that we will out live her. My sister, who is willing to be a guardian when we die, is not much younger than me, and she will also outlive my daughter. As the saying goes, "it takes a village to raise a child." In the U.S. we don't have such villages. In other cultures there are strong expectations that family takes care of each other - across the life spectrum. Without that people are left to depend on strangers who don't understand their unique needs - and leave the vulnerable more subject to abuse.
Looking out for the well being of one's family (children, parents and siblings) is an important value and ethic, and it's reasonable and right that this family tries to build that character in their children. I personally would be upset if my children selfishly didn't.
It's reasonable to ask where a good line should be drawn between that ethic and effort, and a large foisted responsibility that isn't volunteered. Probably somewhere in the middle - and practically speaking, leaning much more toward building the desire to care for each other and less toward trying to force that care.
While the parents should try to avoid the need to overburden their other children, seeking for their children to feel a responsibility to care for their family and provide reasonable help to them is a worthwhile moral value.
2
I read the Ties column with joy and often come away feeling better about all our human struggles in this difficult world. I have never felt compelled to comment until now.
I must comment to say that I deeply, deeply, abhor and condemn the author's attitude of forcing a disabled sibling on her other children. I do not believe at all that a child is responsible - mentally, physically or financially - to his or her sibling. They did not ask to be born to you or with a disabled sibling. I have the utmost compassion for Jeffery (I am 13 weeks pregnant, and autism is one of my greatest fears), but make no mistake: Jeffery is YOUR responsibility as his PARENT. To foist this burden on your other children is, at best, unfair and, at worst, irresponsible and cruel.
The fact that you and your spouse have made moderate but - according to yourself - very possibly inadequate financial provisions for Jeffery is the nail in the coffin about this situation. No, you do not get to pad your retirement savings; your first and foremost responsibility is towards Jeffery, and making sure he is as least of a burden on his siblings as possible. If your life insurance isn't sufficient, do without the luxuries and buy more.
I am sorry to say that this is an example of the worst kind of parenting, and I can foresee a bleak future of, and relationship among, those three poor children, due to your own making.
257
Wow, that's a really harsh judgement. Like many pre-child declarations ("I will never drive a mini-van!" comes to mind) perspectives can change. As a parent of a neurotypical adult child and a soon-to-be 18 year old son with autism, my perspective is more sympathetic. Although we won't leave her financially responsible, I still hope that my daughter will look after my son when I'm gone.
58
Wow, you sure seem comfortable casting aspersions on these parents. I hope parenting your child visits no unexpected circumstances upon you that force you to rely on others.
46
Ouch. Easy to judge from the outside but that’s not what’s needed here. Who among us would handle this situation perfectly if we were in these parents’ shoes? The ability to share honest feelings, questions and struggles is essential for folks in this position.
32
No real answers here. The last sentence says it all (and for all of us, no matter the circumstances): "And we can only hope that we have done right by all of our children."
19
Raising a child with special needs is extraordinarily difficult, and our society does far too little to support those families.
49
Your two younger children are individuals. They have the right to their own lives, their own careers, and their own families.
170
I'm doubtful the writer was suggesting that the two younger children *couldn't* have their own lives, their own careers, their own families. She is only hoping they make room in their lives to help their brother and look out for him.
16
She isn't hoping, she's using guilt to manipulate them.
11
If the role of Jeffery was changed to that of a spouse, how many of us would be calling out for a divorce? Of course one can say Jeffery is ill but so is a violent abusive alcoholic dad. Would we blame such children if they no longer wanted anything to do with said father?
Jeffery's behavior was abusive to Nick and Grace. The twins should not be paying for rest of Jeffery's life.
187
I don't know if it's exactly fair to call it "abusive," when it was due to his illness. I do know that making it known to the siblings whom he mistreated that you expect them to care for him later is a pretty bad idea.
16
Thank you for sharing your story. Raising a child with disabilities is complex and heart-wrenching and finding support can be very difficult. Rest assured that you have done your best as parents and that all of your children will also do their best.
20
Sometimes the best way to deal with a child who will live on is to leave money in a trust so that it can be used for their welfare, no matter who is responsible for them.
The child may not outlive you by long. My sister-in-law lived only one month after her father died. She had Downs Syndrom and was in her forties. She went to an adult care institution and she died of heart failure. She had stayed home with her parents all her life and probably couldn't adapt.
There better you can settle the life of your son, with every support system possible, the better his future will be. This country doesn't have much room for extra stress in people's lives. Your other two children will be on a treadmill, trying to pull together the resources to launch they own children. They will have obligations to husbands and wives. They will be working forty to sixty hour weeks to hold their lives together.
Unless you can leave them with enough extra resources to overcome that, you will need to do everything you can to help your autistic child have a strong outside support system. You might also investigate what other people have done with respect to providing ongoing support for their autistic progeny.
83
I am a 73 yr old sister of a 69 yr old brother in similar straits. Fortunately my parents did as suggested here. From my position, I will tell you that the twins very well might change once they have families of their own. My brother is provided for, thank heavens, but my children and I agree that we understand that there will be little or no inheritance down the road. Not everyone would agree with that acceptance.
23
you are a great parent! your story is very inspiring.
5
Yes, the part where she neglected her younger children and subjected them to an unstable, violent sibling was heartwarming.
54
I have much sympathy for you and your family. I, too, have a son with a disability and one day his siblings will be in charge of him. Thank you for sharing your story.
10
She maintains they've "worked to make the twins' burden as light as possible." My dictionary defines burden as "that which is borne with difficulty." Nothing light about it, being realistic, no matter what the parents wish and hope for once they are gone. Why assume the adult twins will act in concert, anyway? Who could blame them for wanting their adult lives to be free of this burden -- this profound difficulty -- that blighted their entire childhoods?
158
This is very painful to read- I don't even know if I have an argument against what you are saying, but I find it stunning how many people are recommending this comment despite the incredible selfishness in your statement. Is family only family, is blood only blood when it is convenient? Is the self so important that this 'burden' that has 'blighted' their childhood should be ignored, put away?
I get that life is complicated and hard, and caring for an autistic sibling significantly adds to the difficulty. What I don't get is this callousness. I am trying to put myself in your shoes- if this is your attitude, do you also assume that no one will care for you in your senescence, that you yourself will be too great a burden for someone else?
56
TL - Please put yourself in the position of Jeffrey's younger siblings. Your older brother is bigger and stronger than you, he is violent with you; so much so that your parents lay awake at night debating whether your safety is more important than Jeffrey's needs - and conclude that it isn't. The violence doesn't stop until you get big enough to protect yourself. No one wants to hear about your fears; they are too busy lecturing you about responsibility and compassion.
This situation is far more complex than a relative who merely needs physical care.
238
Agree with HT. It appears that these younger siblings are painfully aware, as it is obvious in the writing of this article, that they will always come secondary to Jeffrey. As you say, I can't even imagine how it would feel in those early years to know that you would be subject to random violence from your sibling, even to the point of being smothered, and to have the needs of perpetrator of that violence put repeatedly over your most basic need for safety. Even to the point where their parents find something insulting that Jeffrey says without meaning funny about their younger son, but their younger son does not- not exactly showing a lot of empathy there.
So why is it surprising when your other children have had their very basic physical and emotional needs ignored and put secondary their entire lives to their brother, that they are not excited about doing it for the rest of their lives as well? They did not choose to have him - you chose to be his parents, and to have that responsibility. Should they also now miss out on experiences in life such as schooling, travel, marriage, having their own children, funding their own retirements?
And yes, actually, people who have normal relationships with their parents and siblings DO accept their "duty" with joy- because they don't see it as such. They see it as just a normal part of living in a loving family.
6
I feel less alone having read these comments, in a sad way. My much-younger brother struggles with depression, anxiety, and other mental health difficulties, but when he was younger it was passed off as “things boys do.” I just remember a constant chorus of being hit, kicked, punched, screamed at, told I was worthless, shot with a BB gun, and waiting on him like a maid (as my poor mother still does). It was a vicious cycle that nearly destroyed my parent’s marriage. In high school I finally broke a lot of it as I made up lies to stay after school so I couldn’t “babysit him.”
Now I am 23, the same age as the writer’s children, and he is 17. His temper is largely under control and he is remarkably self sufficient, but we do not have a close relationship. The “polite detatchment” the author’s kids feel is spot on. Recently I invited our school police officer to speak with my students (newly arrived immigrants) and explain their rights and warning signs of domestic abuse. As she explained what abuse looks like, it suddenly dawned on me that sibling abuse is never discussed and I sobbed in the bathroom after that class. I finally had a word to describe my life, but what would I have done knowing all of this when I was a teenager? I love my parents still, and while my brother nearly destroyed my family I know that calling the cops on my brother absolutely would have ripped us all apart for good. We have healed, but I left when my brother was 12 and rarely looked back.
10