Tuesday, January 27, 2015

Thoughts on Sibling Issues





I've been talking a lot lately to friends and colleagues about sibling issues -- not just the near-constant bickering and conflict between typical siblings (ahem) but the relationships forged between developmentally disabled persons and their siblings. From the moment both Henry and Oliver were pulled out of my watery womb and into the air, I was aware of the implications for them. For Sophie, of course, having siblings meant more love and more life around her. When people ask me how I got up the nerve to have another child, particularly as we never did know the reason for her seizures, I generally say that it was an impulsive decision and that I couldn't imagine anything otherwise. In my heart I held the thought that more children, more love for Sophie, more people to bear the burden of caring for her when I no longer can. Is this unfair? Perhaps it is, but I mitigated the thought with a firm resolve to not expect my sons to do anything for Sophie except love and accept her. I was also -- sometimes painfully -- aware of the enormous burdens that parents of children with disabilities sometimes place, unconsciously on their typical kids. I never wanted either son to feel "responsible" for making peace, for not adding to my stress, for "making me happy." Even so, I have seen subtle signs of these things in both my boys over the years and felt both panicked and despairing over them as well as matter-of-fact (it comes with the territory) and resigned. You can turn any virtue into a vice and vice versa. My boys are incredibly self-sufficient and they've also been neglected. They jump to help me when I need it, but they are sometimes resentful that they are called to do so far more often than their peers. They love their sister and hate her sometimes -- or at least the situation. They've learned to accept the sudden and disruptive changes in plans we're often forced to make but voiced their annoyance and resentment of those disruptions. I listen to it all and try to respond and not react. Yes, sometimes I want to scream at them that I'm doing the best I can, that they're spoiled and clueless and have no fucking idea how fortunate they are, but instead I stop and listen and repeat what they say. You're really angry that Sophie continually seizes during dinner. I am, too. I hate it sometimes. You're really pissed that we can't go on family vacations very easily, and I get that. It's a bummer, and I am so sorry about that. That I'm not perfect goes without saying, but that my boys aren't perfect either when it comes to compassion and feelings of benevolence toward their sister is also true. I am sometimes irked when people talk about the great compassion that siblings of the developmentally disabled learn at a young age, how special they are and all that jazz. Maybe I'm defensive about it because of some deep-seated fear that I've fucked it up -- this parenting of three wildly different individuals, one of whom is basically a perpetual infant in her needs. I think, though, that it bugs me because it's unrealistic and it, in some way, makes trivial the very real hardships that siblings face.

This is an ongoing conversation. I'd love to hear what you think.

22 comments:

  1. I am getting a crash course in being human lately and what I get from reading this is that you guys are human too. Love it.

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  2. I'm sure I've mentioned to you the book "The Normal One: Life with a Difficult or Damaged Sibling," by Jeanne Safer. I apologize if I haven't. I wish I'd read it when I was five. Well, okay not five, but you know...I wish my mother had read it. She did not know enough to acknowledge the pain or even the frustration the rest of us felt, and I'm so glad you're doing that with Henry and Oliver. The book will provide insight and later on I hope they read it, or something even better. You're doing great, there's no way you cannot see that, and you're right that the position they are in is challenging. Love to you all.

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  3. I have nothing to offer but love and admiration.

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  4. Same here. Love and admiration.

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  5. I think there is also a difference between what siblings go through as children and how that positively or negatively impacts their childhood and what they experience from this in adulthood. I have been reading hear for quite some time and it seems that your boys truly care for Sophie. Henry seems to support her physically and Oliver emotionally with his raising of awareness of the word "retard," etc. Obviously you don't write everything here but from what you do, you don't seem to put unnecessary burden on the boys to care for Sophie in your stead and you have created a family for yourself and all the kids. It is a different family but appears like one full of love and one more compassionate compared to another that might night have a Sophie if that makes sense. I think you are doing a great job with your kids. I wish you had more support and time for yourself at this point in your life and even with that wish, you don't ask or expect the boys to step in for you. In my oh so professional opinion you get an A+ for child rearing and a belief that Henry and Oliver will turn out more then OK and extraordinarily compassionate human beings who never resent Sophie. Sweet Jo

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  6. It's too late for me to offer the level of thoughtful response this deserves, but damn, I loved reading this. And I love you, friend.

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  7. It's too late for me to offer the level of thoughtful response this deserves, but damn, I loved reading this. And I love you, friend.

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  8. One of my school friends grew up with three siblings, one of whom with a severe mental disability following smallpox vaccination when he was 12 months old. There was a lot of nasty and curious talk and lots of silence of course but one day, a new teacher asked her in class (!) to tell us all about what it's like (this was in the early 1970s) and she just said, my brother teaches me love.

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  9. This comment has been removed by the author.

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  10. I'm not in your situation, but we have sibling issues as well. My oldest daughter is about to turn 15. Much of her childhood I was a single mom and I was debilitated by mental illness (clinical depression and PTSD from sexual assault). I was also working and in college full time. So I was absent and even when I was physically with her I was "not all there". Now fast forward and I'm in my 30s, married, and with a 4 year old and 2 year old. My husband adopted my oldest daughter which has helped her feel loved and included, but I know she resents her brother and sister. They have always had two parents who are very present and more financial security. All I can do is not hide from our past struggles and talk about it. I make sure we have "girl" time with just us each week and I talk to her about the past when she asks and I make sure to affirm how important and loved she is. It is all I can do.... but the mom guilt... whew... it can be crushing. You're talking to your boys and acknowledging the difficulties and the great things they do. That is huge! They know they're loved and appreciated. Be easy on yourself, mama, you've got this.

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  11. Just that you've been aware of these issues from the start and working to be mindful of your boys' experience is huge. I grew up with sibling issues and my parents did not share your mindset, perhaps the opposite, and it was not healthy.

    I think you're right to say some of it is inevitable. Validating their emotions is important and it sounds like you are doing that. The are still children, even though older and mature, so keeping the grown-up burdens on yourself and your spouse, and less on them is important IMO. Again, sounds like you are doing that.

    I don't like the comments you cite people making about siblings of a disabled child, so I agree with you there too.

    Sounds like you are doing all the right things in a situation that is not so easy. And you seem to have great kids. It's great they voice their resentments and disappointments, it means they feel comfortable to do so, that is a great sign in my view.

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  12. This is a big issue in our house. My nineteen year old has epilepsy, autism, learning disabilities, blah, blah, blah, and she has always needed so much support, and I have always felt bad for my younger daughter, now seventeen, who has her own issues (ADHD), but who has simply gotten less attention, even though the attention (doctor's appointments, help with homework, help with seizures, etc) is not the attention she would want. This will just weigh heavy on my heart forever, and I know that she is scared that she will have to one day be responsible for her sister, even though we have made it clear that we will never try and put that struggle on her shoulders. It's just so darn hard. Blah. I could go on forever.

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  13. I just love that you approach the issue with a holistic sense of what is. Yes, you have been mindful of what it might mean to the boys (and to Sophie), but you've also allowed yourself to have all of the feelings that naturally come out, whether they are happy ones or not so happy ones. As the sibling of a person with bipolar disorder, I was often called upon to raise my sister when my single-mom couldn't do it anymore. The mood swings from suicidality to homicidal rage were simply exhausting and, while there were times in my adolescent narcissism that led me to rail against my lot in life, I never, ever lost sight of the fact that this was my sister and I loved her. Ultimately, my relationship with her was like any other, with ups and downs, moments of gratitude for her being in my life, and moments of total hatred for her and what it meant for me. It wasn't until years later that I was able to fully appreciate the lessons from that time, and I know I wasn't more compassionate or kind or even a better person than any of my peers because of my life with her - I just simply had a different path. As a parent, I think the fact that you let yourself be human and acknowledge the boys' humanity as well is the biggest gift you can give to everyone.

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  14. The photograph says it all. The embrace, the closeness. A testament to their wonderful mother.

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  15. All siblings have issues. Your kids might have a heavier burden but all families have "things." I have one brother. We had a sickenly normal family growing up. I got married, then he got married, then he had two babies and then he had a total psychotic break and got divorced. My dad worried that if he died first my mom would be stuck dealing with all the problems regarding my brother. Then when my mom was sick she worried that I would be left with the "burden." And I kind of am. You just never know what life will throw at you. And from the little I can see, you are handling everything well and your boys will be fine. They will learn from your strength and they will teach the world about acceptance and caring for someone with real challenges in life.

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  16. I'm going to say something that's going to sound a little new agey pie in the sky but I actually do believe this: your boys, their souls, CHOSE to come to you; they chose you pre birth and they chose Sophie and the whole situation. I am sure their souls have loved you and Sophie long before this life and they looked down and wanted to help out. So they were born to you. And they are who they are. Not perfect. Not zen. But full of love and wicked humor and crankiness and loyalty and teenageriness and fun. And they are fantastic exactly as they are. I admire the calculus you made: more life, more love for Sophie. And for you all.

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  17. It was wonderful to read your post and all these comments. You struggle and you do it well, you're too good to do otherwise. The boys struggle and they do it well. And because you are the person that you are with all of your strengths and foibles it seems that you've taught them with your acceptance of yourself to be tolerant of themselves and their imperfections - or at least they will figure that out as time goes by.

    I'm not sure if I'm reaching too far here but siblings have love, compassion, hatred and rivalry even if one of them is dead. My daughter struggles with many emotions for a sister who died too young - even though they never met. For years I've watched her go in and out, up and down in her relationship, and believe it or not there is still a relationship there, even though one is no longer here, a complex one but a valid one. I do what you do, I support her, praise her and acknowledge that her path is difficult because of decisions that I made and I am very proud of her for all the ways she walks it. And yes, I fucked it up and I don't even have to second guess that one.

    But I'm a mom and like you I do the best I can. And I come here to remember that when I read you.

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  18. I'm sure Henry and Oliver HAVE learned a lot through their experiences with Sophie, and no doubt Sophie has benefitted. I can't imagine how hard it would be to have a sibling who needs perpetual care, and to have the knowledge that care would likely fall to me at some point. Even if it's not actively expected, it would be hard not to feel some sense of responsibility.

    As for the bickering, well, that's nothing. My brother and I bickered constantly. It's just what kids do.

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  19. I think you are doing an amazing job letting them voice how they feel, letting them be honest, not trying to make it all okay. Trust me, this is not always the case. Just that alone is so important.

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  20. I'm in no position to judge one way or the other, but I've always been deeply impressed by what you share here, as far as how you relate to your kids and how they relate to each other. It seems healthy, and that is the highest compliment I can think of at the moment.
    I think all kids, to some degree, try to protect their parents from hurt and suffering (try to make peace; want to not add to stress, etc), and all parents want them not to do that, so there's that.

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  21. I would love to discuss this in person. I think about it a lot - in our family's case, the sibling whose life was altered when his sister fell suddenly ill, and then died after 10 months of horrors. I think about what we did and didn't do, what we were/are like in the aftermath, and wonder about the long-term impact upon him. I wonder about my lingering sense that "the worst has happened; the worst could happen," which co-exists with my deep-rooted faith, hope and love in God. No answers or logic here; just feelings and observations. Love to you and yours.

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  22. There is just so much to say on a topic like this. Where do we start. I think both your boys have mad small choices throughout their lives about how to deal with all the things that Sophie brings to your family. The could have chosen love or they could have chosen bitterness. As a sibling of a brother that got the lion's share of the attention I can understand bitterness. But, thankfully a lot of luck and a huge portion of good parenting they have thrived. They are good souls.

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