By the time Nick and Grace were teenagers, their older brother was mostly an embarrassment who shouted inappropriate comments during school performances. Once Jeffrey became interested in girls, he crashed Grace’s slumber parties and tried to impress her friends by following them around while reciting the distances between planets.
When Grace complained that Jeffrey was giving her friends inappropriately long hugs, I had to concede that there needed to be a shift in the point where Jeffrey’s rights ended and Nick and Grace’s rights began. We started confining Jeffrey to his room when the twins had friends over, albeit guiltily, plying Jeffrey with treats to lessen the sting.
Nick and Grace were 15 when Jeffrey graduated from high school and began the difficult transition from the sheltered special education system to the unmerciful adult world. The goal was independence, financial and otherwise, but it felt like a marathon of one step forward and two steps back. One night, Jeffrey told us that on his way home from his part-time job as a stocker at Walgreens, a stranger stopped him and asked for $10. “I told him I didn’t have $10,” Jeffrey said. “But I did have a $20 bill, so I gave him that.”
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. Dan reminds me that few people accept familial duty with joy.
We have worked to make the twins’ burden as light as possible. We placed Jeffrey in one of the rare independent living communities for disabled adults, where he lives in an apartment with a roommate, manages his own shopping and cooking, and has friends. He says he is happy there.
After we navigated a labyrinth of government bureaucracy, Jeffrey now receives disability payments that cover his rent and most of his food, and qualify him for Medicaid and assistance with things like applying for jobs. It is a big help and we are grateful for it, but we still pay several hundred dollars each month to cover the community’s fee for having an on-site resident assistant, as well as Jeffrey’s clothing, transportation and other personal expenses. Dan and I set aside as much money as we can for his future while saving for our own retirement, but it is likely that Nick and Grace will need to carefully ration our life insurance payout to keep their brother clothed, fed and supervised.
We have done what we can to provide Jeffrey with a fulfilling adult life, but his world remains circumscribed by his disability. He does not drive, and has been unable to land a new job despite sending out dozens of applications. He has never had a girlfriend and still struggles to manage his hygiene.
Nick and Grace, meanwhile, at 23 are now busy young adults with romantic relationships and promising careers. They 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. We sometimes remind the twins of their duty to care for Jeffrey, and with the optimism and confidence of youth, they say they will handle it, and anyway, it is far in the future. But I know that the future has a tendency to arrive sooner than expected, and that it will not be easy.
Now in our 50s, Dan and I are like two aging philosophers still whispering unanswerable questions in the dark, even though there are no children left in the house to overhear them.
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 will be passed down, along with the silverware and the photo albums, and Nick and Grace will be forced to take up where we left off. And we can only hope that we have done right by all of our children.
I thought this was a fairly normal article in the world in which I live – you know, first-person account of dealing with autism.
I was wrong. This was no normal article. Well, at least the reactions haven’t been normal. They’ve been absolutely vitriolic. Now look, this ain’t exactly a YouTube video, where you expect half the comments to be braindead claptrap. This is a little different.
If the link is working, please read the article’s comments section. If it’s not working, well, let me help you. As you may know, The New York Times sorts the comments by number of recommendations. So let’s use the Times’ system; the most-recommended comment is the first one below, the second-most-recommended is the second one below, and so on. And now, comments:
“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.
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.”
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.
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.
From Canada (that’s as specific as the person got):
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.
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?
From New Jersey:
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?
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.
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!
On and on like this. On and on and on. Do you see why I’m concerned that Ms. Choi may find a way to have the NYT remove this article from online? Frankly I’m frightened for everyone involved, considering she didn’t say that she was using aliases.
Finally, finally, we get to comment #18 (ranking them by “recommended” status), which offers the very first contrary opinion, from Boston:
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.
Now, look, I don’t know what we’re going to do with, or tell, Dar’s brother, R, who is now six. We have never told him that Dar is his “responsibility,” and after reading all these comments I doubt we ever will. I have written often about this problem in this space…we feel that the best we can do is try to foster brotherly love between them. I mean, we also show a LOT of love to R, maybe we spoil the heck out of him, not sure about that, could go either way.
If there are no major disasters in our lives (knock on wood), we should be leaving these two brothers some money. I suppose the way we’d like to put it is:
R, you know Dar can’t handle money. So understand we’re leaving half for you and half for him, but we’re asking you to handle his half. Lots of people do this in a trust situation, and in fact “trust” is well-named, because we’re trusting you to handle his money in his best interests. (Hey, maybe “interest” is well-named too.)
Or maybe I should let the NYT commenters tell me what to say. Le Sigh.