Wednesday, March 24, 2010

An interesting dialog about siblings of children with special needs (I'm so tired of writing that phrase by the way!) and their perceived responsibilities toward their brother or sister, especially as the parent primary caregiver gets older or dies, is going on over at the wonderful blog Bloom. I've touched on these issues a bit in my blog and certainly have devoted a few chapters on the subject in the book I'm writing. I've read what little literature exists regarding the effects of having a child with special needs in the larger family and believe I sort of, kind of, know what I'm doing.

Just like everything else, though, that comes with the territory, there's a fine line between protecting my boys from taking any responsibility for their sister and the fact that it is what it is. I have intentionally paid them "extra" attention and made sure that they can be angry and stubborn and disgusted and sad without feeling guilty about their complex feelings. Given their ages, they can not possibly be expected to "take care" of Sophie, but I do ask them periodically to check on her in her room and they certainly go into help mode when she has a big seizure and I need their help. Henry, now eleven, learned to buckle himself into his car seat seatbelt, unbuckle himself and jump out when he was no older than three. I didn't realize this was unusual until I drove a carpool and found myself helping the more "helpless" children that I drove, those that held their arms up for me to lift up and out of the seat and then to jump down out of the car. Oliver, too, is probably more self-sufficient than most kids his age and I don't believe that either of them resents this.

One night, a few years ago, when Oliver was no older than five, he and his brother were in bed and, I thought, fast asleep. I heard Oliver call out to me, so I went into their bedroom and asked him what was wrong. I'm scared, he said. I asked him why and he replied What's going to happen to Sophie when you are old? Who is going to take care of her? If I could have, I probably would have gasped, but I was sort of shocked into silence there in the dark by my very young son's bed. I imagined him lying there, in the dark, pondering the deepest, darkest things so I prayed, quickly, that I might answer him correctly. So much of parenting is winging it, no? I told him that Mommy and Daddy would always take care of Sophie or have someone help us to take care of her for as long as we could.

Oliver said but what about when you are really, really old and die? Who is going to take care of her? I don't want to take care of her.

Again, I could have gasped, but I think I smiled and told him that that was a long, long way off, and that by the time I was really old, he and Henry would be big men and would be able to help to take care of Sophie. I think the idea of a being a big man appealed enough to Oliver that he was distracted from the larger existential turmoil, so the conversation ended and he went back to sleep.

What the whole exchange did to me, though, was to put into stark reality just how much children absorb and how complex their feelings really are. I don't think I was naive about the "effects" of having a child like Sophie and I certainly had done my fair share of worrying what the stress of seizures was doing to them, but the bigger and, I think, scarier issues of long-term care and the boys had not crossed my mind until then. I imagined my death in the far future and Henry, the compassionate, easy-going son immediately saying that they would have to care for Sophie just like mom wanted. I then imagined, with my customary dark humor, Oliver saying, mom's dead; it's time for an institution and that thought lightened the heavy load, however briefly (and I would clarify, to those who don't know me that I'm kidding).

What I do trust, though, is that each of my sons will figure out what he is capable of in caring for his sister. Parenting mirrors life's ambiguities and while I like to imagine that all will be well when I am old and gone, I also think who knows? 


  1. this makes me sad.

    why does life have to be so bloody hard sometimes.

    I used to , well still do, feel guilt about how much my children missed out on , or were rushed into learning, or felt my wrath, because of the sheer numbers of them. and my emotional state for a lot of it.

    honestly, things will transpire in ways that you cannot or should not imagine or try and predict.

  2. This is what I think- that it's the family SECRETS that poison our children and mess them up. Not the things, even BIG things, that are hard and that most kids "shouldn't have to" go through.
    Kids are tough. Kids are smart. Kids can be compassionate and caring and sensitive. Learning to be all of these things by watching and even helping as you take care of Sophie is not a bad thing. Not a bad thing at all.
    Keep remembering that.

  3. That photograph makes me so happy that I'm tearful. What a beautiful sight, the three of them together, smiling on the sand, in the sun, under a clear blue sky. Bliss.

    This is a huge issue that you've raised. HUGE. I'm thinking about it with respect to elder care, because of our parents ages; I haven't thought about it with respect to our children's generation. I love that you prayed before you answered his question; what presence of mind!

    I think that I have no idea of what will be, only assumptions of what is possible. And I've been wrong so many times that I would probably end up worrying about something that will never happen, and neglect to worry about what is likely to happen. So maybe it's better to simply be present to what IS.

    Your beautiful, loving family is coping now, and I have faith that you have equipped them to continue to cope, with whatever life deals them.

  4. Elizabeth -- thank for continuing this discussion. It is fascinating to me also to see how much our kids think into the future. I'm always assuming that my kids aren't thinking about the future and Ben -- but perhaps it's just that I don't ask! Now I'm afraid to ask!

    I loved your interaction with Oliver and your answer.

    I would love to know what your other followers envision for their children -- have any put specific plans into place? We will be running the longer interview with Pat in our June issue and it really brought the issue starkly to me, how little we can rely on publicy-funded supports.

    Thank you again for continuing the discussion -- and I love the photo. Hope you have sun there like we do here.

  5. I try as hard as I can to not think that I have two severe kids and they have no siblings, no first cousins ...

    Sophie's siblings will rise to the occasion as needed ...

  6. Gosh, how did I miss so many of these recent wonderful posts?
    Your most recent post is any essay unto itself. Your pictures from the beach and spring are gorgeous, and your cranky post made me miss you. I would love to take a class with you again.

  7. Wisdom. You're right, as usual--It is what it is. And your children will do then what they do now--handle life as it comes to the best of their abilities.

    You will have done your best to provide for Sophie and for the boys. And they will do their best to live by the principles they learned at home. The circle will come round to meet at the end.

    I LOVE the beach pictures. Your family looks so at home next to Mother Ocean.

  8. Children will ask and say such open and honest words to us naive parents. Subjects that once said make us realize what we need to comfort them and keep them in the family loop but on levels they can comprehend. How well you did this for your son. It won't be the last time he will ask those tough thought provoking questions but you sound like you have gone through this and are prepared. And isn't that what is best is to be prepared? I think if you really ask yourself the hard questions you are more capable of living them without fear or concern.

    Your photo of your children on the beach together is a beautiful one..

  9. love that photo and these musings.
    I think that was a brave and good conversation that you both had.
    You are raising those boys to be strong, amazing, compassionate men and I think they will be like that picture, the three of them, forever and ever no matter if you are able to be there with them physically or not.

  10. Trust, that is all. They trust you and if you say so, so it is. It teaches them compassion, integrity,
    facing a problem and speaking it out to chase away the fear, all of those things although we do not always know it when we do it. But we do and they learn and when you wrap that package with love, you have decent, honest and loving human beings. Then you know you have done your job right.
    And you have.

  11. My story is similar -- I should write it too to keep this thread going. But quickly, it happened at school, after we had come to Abe's class to talk about Oscar and Prader-Willi syndrome. We left and the discussion continued and another child, a good friend who cares deeply for Oscar asked Abe "what will happen to Oscar when your parents die?" Abe had not considered the question before..and it was handled beautifully by the teachers.

    I think it's a tricky question and I wrote over at Bloom that I really intend to set things up for Oscar so that Abe and Ruby can "just" be siblings. I recognize how naive that sounds, I really do, and generally I am a pessimist but I have an inexplicable hope about this.

    More on this topic on my blog soon...

  12. I'm pleased to meet you, Elizabeth and amazed by the complexity of your struggle.

    To begin with there are the typical and then the not so typical issues to do with siblings.

    You seem to be aware of them and able to talk about them with your children. As Ms Moon suggests, that's the important thing.

    Life can deal out terrible cards. It's not so much the cards we are dealt as how we deal with them and what help we get along the way.

    Your thoughtfulness about, your honesty with and your concern for all three of your children is admirable.

  13. Thanks for stopping by. We have a few things in common...!

    Love your photos too.

    Amazing what our children worry about. I love your writing.

  14. One thing I know you never tell your boys is "Don't be silly," when they raise questions and serious issues. You always dig as deeply as you must for the authentic response (even when "the" answer may be elusive).

    I have a 73 year old sister who will do anything to push back the time of her own death because she has always cared for her now-23 year old granddaughter who survived rhabomyosarcoma (a childhood cancer of the head and neck), but with a panoply of mental and physical deficits. The two women, old and young, are inseparable helpmates to one another. Your piece today brought their situation more sharply into focus for me.

  15. Everybody's got something, right? That's our attitude right now about the responsibilities T-Bone will have for his brother when we're gone. It may not be the same as what other adults have in this world, but, like you said, it is what it is. I'm sure it requires a lot of therapy on the part of the sibling-caregivers. They probably have their own process of grieving for an adulthood they'll never have. One of my best friends in high school had a sister with Downs Syndrome. I remember feeling terrible for her that she would need to take care of her sister as an adult, but we all mature. As a 16 year old, though it was a devastating thought to her.

  16. There is so much here I feel at the center of who I am. From the worries I have about my own girls, to the fear and insecurity I still carry with me from being alone with my mother who struggles with mental illness. There is guilt, and pride... honesty and love. In the end, all of our good "heavies" make us people brimming with empathy.

    Your children will be better prepared for the world. Mine are. I was.

    Moving, honest, completely amazing words here. Thank you.

  17. yes, i understand the depth of such thoughts and considerations. i too, being a mother with grave health concerns, wonder how i have imploded my son's life experience. how it has too frequently changed the landscape of an easier, carefree childhood. yet i can assure you when i look at my now 18 year old son i am amazed at his depth, resourcefulness and compassion. it is heart warming to see that these challenges have instilled in him a depth of caring and emotional strength that enhance his life experience and his place in the heart of others.

    i am confident for you and yours to have a depth and ability that surpasses what a "easy" life might have provided.

    and with that assurance i also wish for you all more ease...a brake, a chance to renew and refill.


  18. Isn't it amazing what deep thoughts our children are capable of?

    I have a dear friend who has MS. Her own mother recently died of MS, so my friend is all too aware of what her future may be, and how much care she will eventually need. Amazingly, one of her three children, the girl, is a born caretaker. This child just came out this way - she tends, she helps, she nurtures, and all with a smile on her face. This girl loves being the caretaker. It makes her happy. And none of us want to talk about the idea that God sent this daughter to my friend to help her as she gets older. But I can't help but believe it's true.

  19. No, we don't know what the future of our children will be like. But as "the bows from which our children as living arrows are sent forth" (K Gibran) we give them an aim and a direction. Is that a good consolation (ever)?



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