When Parents Hope for Their Children to be Cured, Are We Really Wishing That They “Cease to Be”?

Messages about Andrew Solomon’s new book, Far from the Tree: Parents, Children, and the Search for Identity have been coming steadily into my inbox over the past few days. The author interviewed hundreds of families in which a child has some identifiable difference—autism, Down syndrome, violent criminal tendencies, being the child of rape. His resulting narrative focuses on “a crucial question: to what extent parents should accept their children for who they are, and to what extent they should help them become their best selves.”

This is similar to one of the central questions I have grappled with in exploring pre-embryonic and prenatal screening for genetic disorders, in the culture at large and in my own life: to what extent parents are rightfully concerned with alleviating or preventing a child’s suffering due to a genetic disorder, and to what extent they ought to value, and help others to value, their child just as he or she is.

I will certainly read this book, and likely write about it here. But today I find myself shaken, a little angry, and a little confused after reading a quote from Solomon’s book, as reported by Huffington Post blogger Lisa Belkin. Solomon interviewed an adult with autism who said:

When parents say ‘I wish my child did not have autism,’ what they are really saying is ‘I wish the autistic child I have did not exist, and I had a different (nonautistic) child instead.’…This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

This quote made my gut clench, along with my teeth, because it ascribes an intent to parents that is utterly foreign to my own experience as the parent of a physically and genetically different child (although in our case, she fell quite close to the tree, seeing as she inherited her brittle bone disorder, osteogenesis imperfecta, directly from me).

I want to be generous to the person who said this of parents (his or her parents, or parents in general?…I wonder). I know that autism is very different than the bone disorder I and my daughter live with. It affects personality and social interaction, while ours affects bones. Note, however, that I did not say our disorder “merely” affects bones. I refuse the easy categorization of physical disabilities as fundamentally different than other types of disorders, as “merely” physical, for I know firsthand how tangled up body, mind, spirit, and soul really are. My three dozen fractures, crooked spine, mismatched legs, and scars have made me who I am, in private and in public, inside and outside, just as surely as an autistic person’s inability to read body language or disinterest in others’ emotional reactions have made her who she is. And I have no doubt that my daughter’s dozen fractures, along with the despair and anger she feels every time they occur, have made and are making her who she is and will become.

Do I wish my child would cease to be who she is? That I would cease to be who I am? Nononononononononononono. I reject that notion with everything I have and everything I am. But do I think it is sad, and awful, and fundamentally wrong when a little girl’s leg breaks for no fucking reason, when she slips on a book on the floor, when her toe catches for a moment on the rug? Yes. Yes I do. And if there were a way to fix her bones, my bones, to make sure no one in my family ever has to witness or feel that moment of hearing/feeling the crack, and know immediately that another pile of plans and hopes have just been lost to the snap of a bone, I would grab it without hesitation.

I want to understand those who feel that a desire to cure, to alleviate suffering, is an assault on identity. Intellectually and even, to an extent, emotionally, I can understand why they feel so. But I also don’t want to sit by silently as every ancient measure with which we define good and bad, right and wrong, just and unjust is sacrificed to the cause of acceptance. In our well-meaning zeal to affirm unique identity, I don’t want to lose sight of the fact that when bones and brains and psyches don’t work as they were intended to, many things of value are lost even as other things of value are gained—and that it hurts to have bones or a brain or a psyche that doesn’t work as it ought, and not only because of other people’s inability to understand or accept.

Lisa Belkin writes of Solomon’s work:

“Parenthood abruptly catapults us into a permanent relationship with a stranger,” [Solomon] writes. And the coming to terms with that fact, the acceptance of that person who is never as you expected they would be, the loving them because of their differences and seeing the world anew through their eyes, all of that is what makes us parents.

Yes. Absolutely yes. Every parent is tasked with the hard and joyous job of learning to know, accept, and love the child(ren) they have been given. But I’m not convinced that this job requires us to fully accept and love the extra burden of pain and difference that some children and their families must bear.

A previous post addressing this topic, titled “How a Diagnosis Can Both Help and Hurt” is here.

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About Ellen Painter Dollar

Ellen Painter Dollar is a writer focusing on faith, parenting, family, disability, and ethics. She is the author of No Easy Choice: A Story of Disability, Faith, and Parenthood in an Age of Advanced Reproduction (Westminster John Knox, 2012). Visit her web site at http://ellenpainterdollar.com for more on her writing and speaking, and to sign up for a (very) occasional email newsletter.

  • http://www.panama-offshore-services.com/offshore_corporations_panama.htm offshore corporations

    Wednesday the school held its annual Halloween parade; the entire school, about 450 kids, teachers, staff and parents gather on the yard for dancing and celebrating in costumes. This is our 6th year at the school and I’ve been to every one, and during every one the crowd and the noise and the celebrating is too much for my son. He has spent the time either lying on the concrete, legs outstretched, with his head in my lap, or he escapes to the area on the yard where there are no other people. He’s only allowed to “escape” if there is another adult with him, and in years past there hasn’t always been somebody. I’ve been there every time, but I’ve been stuck to my other (NT) child, who would cling to me and cry and not let me leave his side. This year, my younger child was fine with being with his friends and his class, so I was able to take my older son to the empty area on the yard, where it was quiet and empty and still. I sat there on the bench and watched him run back and forth, flap his hands, jump up and down and whisper to himself, and I was struck by something I’d never felt before: Pride. In years past, I may have been upset to be separated from the crowd and all the fun, or I may have felt uncomfortable by having singled myself out, forced to the outsides because my autistic child didn’t like the crowd and the noise. I may have felt sorry for myself because autism was forcing me to be an outsider when, by nature, I am not an outsider. This year was different, though. I was glad to be outside from the crowd, because it was what my son wanted. I’m sure he wasn’t the only kid there who didn’t like the crowd, but he was the only kid who was able to escape from it. I was proud to be the only parent there who had a child who stimmed. I felt like I was part of a special group that’s not like the rest of them; a better group, a more awesome group. We’re lucky, because we’ve got autism. I’m sorry the rest of you don’t.

  • Lindsay

    Perhaps there is a difference for people who have atypical neurology as opposed to physical impairments, such as your own. If the brain is the seat of the personality, the cure for someone with autism, mental illness, or cognitive impairment would fundamentally change the nature of their personality. A cure for brittle bone syndrome would leave the brain more or less unchanged, so curing that would not be a rejection of the inner self of the child.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      I think that’s a piece of it, Lindsay, but I also don’t think that distinction is enough. Because, as I explained in this post, I know that my brittle bones have affected the “real” me–my brain, my thinking, my relationships, how I see the world, how I see God, my spirit, my soul. I think many (most? all?) people with physical disabilities would agree that our entire selves are bound up with and affected by our physical self. So a cure for our brittle bones would no doubt change who I am, who my daughter is, in fundamental ways. I would still take it, though.

      • http://www.ellenpainterdollar.com Ellen Painter Dollar

        I do wish it were that simple, though….thanks for commenting.

    • casey

      No, Lindsay, I’m pretty sure Ellen acknowledges that OI is fundamentally intertwined with her personality.

      “…I know firsthand how tangled up body, mind, spirit, and soul really are. My three dozen fractures, crooked spine, mismatched legs, and scars have made me who I am, in private and in public, inside and outside, just as surely as an autistic person’s inability to read body language or disinterest in others’ emotional reactions have made her who she is. And I have no doubt that my daughter’s dozen fractures, along with the despair and anger she feels every time they occur, have made and are making her who she is and will become.”

    • Thomas R

      I have to admit I’d take it about the way he did and I have OI. OI is inherent, not acquired. Now if I had not had OI much of who I am would likely be the same, judging from the similarities I share with my siblings, but much would be different. I would be a different person and therefore a wish to not be OI is, to me though I know Ellen disagrees, a wish for at least partial obliteration. My parents have never expressed a desire I’d not been OI.

      Now treatment, rather than cure, is a somewhat different matter. If they had wished for better treatment of fractures or even a drug that could ameliorate much of the health problems I could maybe be okay with that. I’ve sometimes wondered what it would be like Atticus Shaeffer, from the Middle, and have a form of OI that’s more mild yet still retains a sense of difference. I don’t wonder that too much though I’d admit.

      One difference between me and the Host is, I believe, she thinks of things compared to the norm or a desire for a normal life. From that perspective OI is a life of more pain and restrictions. If I ever thought of a normal life that ended by the time I was 12 at latest. (Probably much earlier than that) So judged from the standard of “can I have a happy and memorable life” I personally find OI to be an advantage compared to my bipedal siblings. I try not to pity them too much though.

      • http://www.ellenpainterdollar.com Ellen Painter Dollar

        Your last sentence made me laugh. Thanks Thomas.

  • Kate

    I listened to Solomon’s conversation with Terry Gross on Fresh Air yesterday. He addressed this question a couple of times, most notably with the mother of a young man with Down Syndrome, who basically said, “I love my son and accept him completely, my life is richer and better because of him. I do wish, because it would make his life easier, that he didn’t have Down Syndrome.” One interesting bit is that he interviewed Dylan Klebold’s parents. His mother spoke of wishing at the time that her son would be able to kill himself before the police did during the horrors of Columbine, so that she would know that he had wanted to go. It was gut-wrenching. He emphasized that there was a wide diversity of experience, but that he himself became a parent during the writing of this book and that it prepared him for anything and he realized that he would be able to both love a child of difference and would still have a life.

  • Renee

    Recently, there’s started to be a movement among high-functioning autistic people, or people on the autism spectrum, to say that their autism shouldn’t be characterized as a disorder at all. Their brains work differently from those of “neurotypical” people, and this difference has its pros and its cons. Difference alone does not a disorder make. And they might say that most of the difficulties high-functioning autistic people face come from the fact that their brain type is in the minority, so the majority group unfairly characterizes it as bad and expects them to conform.

    Presumably this is not the case with your daughter’s bone disorder. Having bones that break so easily is an intrinsically bad thing, and we can all agree on that.

    I also think there’s a pretty big difference between being told that your *body* is disordered and it would be better if it was fixed, and being told that your mind and personality are disordered and would be better if they were fixed. Sure, your daughter’s disorder has shaped the way her personal character has developed, but that isn’t the same as saying her personality *itself* is disordered. You presumably don’t think so, but the parents of the autistic *do* think that their child.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Those are helpful distinctions. Thank you!

  • http://www.thautcast.com Landon Bryce

    It’s sort of mean to vilify people without learning anything about us. http://thautcast.com/drupal5/content/autistic-people-are-not-allowed-feel-things-parents-dont

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      I look forward to reading the link, Landon. Please know that I was not vilifying anyone, but merely responding to what came across as a harsh indictment of parental motives, and of course, I was responding to that as a parent. But also trying very hard to understand where that person’s feelings and thoughts are coming from. Thanks for commenting!

      • http://www.thautcast.com Landon Bryce

        I think if you actually wanted to know why autistic people feel this way you would have tried to talk to one of us before writing this. It seems dishonest to claim that you are making any effort to understand other people when all you are doing is telling them to shut up because what they say hurts your feelings.

        • http://timfall.wordpress.com/ Tim

          Landon, no one here, and especially not Ellen, has tried to silence anyone for expressing themselves. She is obviously working through this herself. Grace and understanding on your own part might help the conversation move forward instead of shut it down.

          Blessings,
          Tim

          • http://www.ellenpainterdollar.com Ellen Painter Dollar

            Yes, what Tim said! There is nothing in what I wrote that can remotely be interpreted as saying “shut up.” I have a goddaughter with autism and have spent the past several years researching and writing and talking with people living with a variety of conditions, including autism. I am no expert on what it is like to live with autism, and don’t claim to be, but I am trying to host a conversation to help us all better understand the issues and concerns of families living with a variety of conditions today. If you would like to be part of the conversation (and if you are intent on helping me to understand your point of view, I hope you will be), I simply ask that you participate respectfully in response to what I have actually written, without assuming motives and intent that I have not expressed. Thank you.

          • http://www.thautcast.com Landon Bryce

            Wrong, Tim– one does not mke an effort to understand by telling disabled people that their comments are “wrong.” Ellen is tying to intimidate autistic people into silence. She is acting as a bully. Telling me that I need to be more gracious in response to her bullying is immoral of you.

          • http://timfall.wordpress.com/ Tim

            “Ellen is tying to intimidate autistic people into silence.”

            Please, Landon, quote the portion of her article that you take to be an effort to silence anyone. I just don’t see it.

            Thanks,
            Tim

            P.S. That’s the first time I’ve seen a call for grace labeled immoral, but I’m not going to sweat it. God knows what my motivation is.

        • Rachel

          Now I have one more reason to shudder at your writing. I am a Christ follower and the parent of an autistic child. You are making wrong assumptions about people on the autism spectrum, and while as a parent I understand the good desire to alleviate yours and your child’s suffering (and I’m sorry that you both suffer), there is no way that a bone disorder and all the ways it affects you and your daughter is the same as someone whose brain is created so neurologically different that it truly affects the way a person processes and makes sense of the world, and the difficulties of trying to navigate in a world defined and ruled by people whose brains are deemed neurotypical. It has already disheartened me that in the name of Christ you are pro-abortion (besides the fact it is not biblical, it’s very strange because abortion rates among the genetically “imperfect” are not only high, but advocated in the world), and that you use foul language like the F-word among other things to make your point. It just weakens your writing and is disgraceful. I do not see the one true God glorified in your work, I see a false god you have made up and blasphemed, and I do my best to ensure other people who don’t know the one true God and His son Jesus that you and your thoughts as you write them are not an accurate representation of the truth. I find you to be extremely dangerous-a false teacher- and it’s really sad. Just like Landon said, it would be a good idea to talk to autistic people first if you really wanted to know what was behind their point of view. They have legitimate reasons, just as parent you have yours. And as a Christian I would add that you might want to read what God’s word says about some of the things you say, unless “Progressive Christian” means to just twist it to mean what you want. Well then just call yourself progressive and leave Christ who is the same yesterday, today and forever, out of it.

          • http://www.ellenpainterdollar.com Ellen Painter Dollar

            “…there is no way that a bone disorder and all the ways it affects you and your daughter is the same as someone whose brain is created so neurologically different that it truly affects the way a person processes and makes sense of the world, and the difficulties of trying to navigate in a world defined and ruled by people whose brains are deemed neurotypical.” — That may be so, and as you can see, some previous commenters have offered some insights on why. I welcome those insights. This post, like most of what I write around issues of disability, is more about opening up conversation than staking out positions, and I WANT people with other experiences to help me understand where they come from.

            However, I ask that you do so without insulting/belittling my faith. If you continue to add vitriol to the conversation instead of insight, you will not be allowed to participate. If you’d like to give this another try, by telling me why you believe that the experience of living with autism is different than my experience, and in what ways, and do so respectfully without calling me names, then you are welcome to do that. Thank you.

          • http://www.ellenpainterdollar.com Ellen Painter Dollar

            And I have to wonder why on earth you would spend your time reading writing that makes you “shudder”?

          • DaveP

            > like the F-word

            Ellen, I was also a little surprised by that. I hope that you and/or your daughter aren’t having a particularly bad time right now.

          • http://www.ellenpainterdollar.com Ellen Painter Dollar

            Nope. I just love precise language and sometimes an f bomb is the only thing to do. This post came from the gut.

          • DaveP

            > “But do I think it is sad, and awful, and fundamentally wrong when a little girl’s leg breaks for no fucking reason”

            > “I just love precise language”

            Thanks for the clarification. I am relieved that the little girl’s broken leg was not due to sexual intercourse. :)

  • http://timfall.wordpress.com/ Tim

    I remember years ago hearing the phrase “differently abled” suggested as a replacement for “disabled.” It hasn’t come up recently in my reading, but it sounds like the concept is still being discussed.

    • Thomas R

      I think “differently abled” was seen by some as condescending. Personally I can relate to the term “differently abled”, but I can also see cases where it could seem problematic. A person who say is blinded by an industrial accident I think has reason to feel “disabled” not “differently abled.” They can accept it and move on and all, maybe should, but it’s not like their body was really restructured to have some new thing rather than sight. They’re, fairly literally, a sighted person who was injured.

      My arm used to bow outward, but a terrible accident caused the bone to go inward. Outwardly it may appear less deformed than it was, but as the bone now goes inward it’s hitting nerves or muscles or something and makes my arm weaker. So for me, if I have a disability, that’s it and if I thought fixing it would work I might do that. I guess I don’t feel it’s a “different ability” because it’s not like a straighter impaired arm can do anything new that I can see. Now being under four-foot tall with club feet does not “feel” like a disability to me. It doesn’t impair me compared to any state I’ve known nor keep me from doing anything I did before. In most ways I’m more able now than when I was a boy.

      • http://www.ellenpainterdollar.com Ellen Painter Dollar

        I agree that “differently abled” has always struck me as wrong somehow. You have articulated it well.

  • h2

    Here is a very basic question that comes to mind upon reading this: Who are you (or am I or are we) to determine “…when brains…don’t work as they were intended to..?” What IF God designed some to be wired differently (which is, of course, why there are artists and geniuses in the world–different wiring —-> different personality)? What if that is part of his design?

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Yes, I think that is an important and key question. I also think the question is most relevant, and also perhaps trickier to answer, with conditions affecting the brain rather than other systems. I am pretty sure my bones don’t work as God intended, but find the argument that, say, autistic brains are simply different rather than disordered to be compelling.

  • Tamara

    I read an article based on the NPR interview cited above and could very much relate to the mother who had a son with Down syndrome. My son also has Down syndrome (and ADD). He is 15 years old. I very much enjoy being his mother. He is very much his own person and does have a unique perspective much of the time that sometimes makes me smile, sometimes makes me think more deeply and sometimes just makes me shake my head. For me, having a son with Down syndrome has been a very positive experience – have great friends I would have never met, have increased my understanding of disability and issues related to disability, have learned a lot about things I never would have known about – but most of all, I enjoy my son – even the more challenging moments. That said, I don’t think he would mind it so much if he were able to keep up with his peers academically, have a better understanding of life in general that comes with expanded ability to think more abstractly – and I know he’d like having a possibility of a date with some of the “gen ed” girls. :-) I don’t think his extra chromosome defines him. And I don’t think that if I would take the Down syndrome away, I’m saying I wish he didn’t exist anymore than it would mean that other parents wish for a cure for cancer or any childhood illnesses.

    While every person with Down syndrome is very unique, I do think autism is a much wider spectrum, and I can understand why some people with autism would argue that point; but I also don’t think they understand the whole spectrum – but neither do I … :-)

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      “…I don’t think that if I would take the Down syndrome away, I’m saying I wish he didn’t exist anymore than it would mean that other parents wish for a cure for cancer or any childhood illnesses. ” — Yes, I think that’s where I come down when it comes to the bone disorder in my family. Thanks for all of these good thoughts and sharing your experiences.

  • DaveP

    > When Parents Hope for Their Children to be Cured, Are We Really Wishing That They “Cease to Be”?

    I don’t think so. I think that on average humans are happiest when they’re average — mentally, physically, and socially. So when parents hope for their children to be “cured”, I think that simply means they wish their children were average — because on average that means their children will be happier.

    For example, on average I think that middle class people are happier than either poor people or wealthy people. For another example, if you superimpose lots of different faces from a population to create an average face, the average face is considered good-looking.

    In fact, if it is average in a society to be “disabled”, then I think parents will actually “cure” their children by disabling them. The examples of circumcision, or binding women’s feet in China, come to mind.

    Average kids are also safer, because there is safety in numbers. There is also convenience in numbers — if 99% of society had brittle bones, then society would be set up to cater to people with brittle bones and people who didn’t have them would be inconvenienced.

    Example to ponder: all humans on earth are severely disabled now because we can’t digest grass like cows. If we could, that would end all hunger and starvation. But we don’t realize how disabled we are because on average, everyone has that same disability. If humans ever evolve to digest grass, any future children who are born “grass-intolerant” might feel like outcasts because they won’t be able to eat the McHay burgers in the Happy Meals. :)

    • http://timfall.wordpress.com/ Tim

      DaveP, you’ve done a great job showing how we can find complacency in averageness. Whether this is good or not is another matter, but I think you’ve squarely hit on one of teh great truths in our society: average (whatever that may look like) is “safer” (whatever that may mean) than not being average.

      Tim

  • http://www.thautcast.com Landon Bryce

    Tim:
    Ellen attempts to silence autistic people by telling us that our honestly expressed emotions are wrong:
    “This quote made my gut clench, along with my teeth, because it ascribes an intent to parents that is utterly foreign to my own experience as the parent of a physically and genetically different child (although in our case, she fell quite close to the tree, seeing as she inherited her brittle bone disorder, osteogenesis imperfecta, directly from me).

    I want to be generous to the person who said this of parents (his or her parents, or parents in general?…I wonder). ”

    Where do you think she made any effort to be respectful to us? How do you think writing a nasty blog post like this rather than contacting an autistic person or doing 5 minutes of research to learn about our long-standing objections to the word cure shows an interest in our point of view?

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Landon – You are so severely misreading what I wrote that I don’t even know how to respond. The quote above is an honest expression of how I felt upon reading that quote, as a parent, who find the idea of parents wishing their children would “cease to be” somewhat shocking, difficult, and challenging. I wrote that I “want to be generous” because I do, and that too was an honest admission that despite my visceral initial reaction, I want to understand, to learn more. This post is an attempt to do that. Perhaps, instead of ascribing motives I don’t have and putting words in my mouth, you could BE that autistic person who educates me on your “long-standing objections.” I’m giving you one more chance to change your tone and participate respectfully and constructively if you would like to. Tell me your objections, but don’t tell me I have told you to shut up or been nasty, because I have not. And if you see nastiness in this post, you need to look inward, because it ain’t here.

      • http://www.ellenpainterdollar.com Ellen Painter Dollar

        “…by telling us that our honestly expressed emotions are wrong” — I said that this person’s honestly expressed emotions disturbed and upset me. I did not say they are wrong.

        • http://www.thautcast.com Landon Bryce

          Ellen:
          You wrote that the autistic person “ascribes an intent to parents that is utterly foreign to my own experience as the parent of a physically and genetically different child.” You are saying that people who feel that way are wrong– that parents don’t actually feel that way. You subtly undermine that person by suggesting they may be giving in to a private vendetta (“his or her parents, or parents in general?…I wonder”). You describe autistic people in crude stereotypes (“just as surely as an autistic person’s inability to read body language or disinterest in others’ emotional reactions have made her who she is”). You may not see the nastiness in doing that, but it’s yours, not mine. And, again, you do not ever learn about others by writing about them and explaining that their point of view cannot be valid because of your tangentially related experience. You could have read the stuff I’ve already tried to give you about autism and cure to indicate some degree of respect before starting to lecture me. Here it is again. If you actually care, I will be happy to discuss after you read it. http://thautcast.com/drupal5/content/dear-autism-speaks-cure-still-four-letter-word

    • Thomas R

      Although I disagree with, and have disagreed with her in the past, on these kinds of issues I think you’re being unfair. I told her I am happy to have her specific condition of OI, something many autist-supporters here seem to agree is “a bad thing”, and that I’m a little uncomfortable the only OI blogger here feels as she does. However I respected her right to feel differently about it and she was fairly polite to me. Moreso than I might have expected.

      On autism I honestly think it varies as it does with OI. OI type II rarely live past age five. If I had a type II child I could see maybe wishing he or she was Type III like me or even a more mild kind like I or IV. (Although even then I admit I might wonder about that feeling) My nephew’s form of autism has led him to be confused on how he, or others, perceive pain. So he’s hurt himself and others. I can understand a desire not to want to see your kid hurt or hurting themselves. I think that’s where she’s coming from. Whether this kind of protectiveness is always good is an issue worth considering, but I don’t think it makes her as bad as you’re indicating.

  • Michelle

    Landon, I think you are off base. I share Ellen’s disability and disagree with her on this topic. But I truly believe she is not trying to silence anyone. I really hope folks aren’t reading it that way. This piece has me reflecting on this topic all day. For many years I have believed that I would not trade my disability for a cure. My disability has been a catalyst in my life, shaping so intrinsically who I am, bringing a deep richness to my life. A richness I would not trade for a cure.

    That being said, I understand the difficulty parents have watching the physical, social and intellectual struggles a child with a disability encounter. They are heartbreaking at times, often more so for parents than the child with a disability. My disability, and my hundreds of broken bones, has scarred my parents far more than it has scarred me. I often wonder if parents reactions are more affected by their own processing of the child’s disability than the child’s. Many of the barriers faced by individuals living with any type of disability are actually society’s problem and not the disability. So let’s work on making society more accepting and accessible while trying to understand the grief and anguish parents go through when their child has a disability, even if we disagree with a wish for a cure.

  • Charlene

    I have been following this conversation and am simply flabbergasted by the anger and accusations. As the mother of a profoundly retarded daughter with an uncontrolled seizure disorder, my only agenda is to love and care for my daughter. Expending all this energy to accuse others who have hurt as much as I have as a result of having a child who is different, or ill or differently abled is inconceivable. I had a great deal of difficulty many years ago reconciling the desire to pray for a “cure” for my 15 month child and the need to love her as she was. I felt that praying for her to “be better” somehow represented a betrayal of love for her. It took me many years of soul searching and prayer and thinking to realize that loving her yet wishing that she could have the life choices that most other people take for granted are not antithetical. I love her as she is is but I will never stop wishing that she could have been the little girl who walked into school with her lunchbox, danced down the aisles of a toy store, went away to sleepovers at her friend’s, walked across a stage to receive a diploma, waved goodbye to me from her college dorm and all the many other life’s passages that her illness denied her. To pretend that she wouldn’t have been better off without hospitals and medications and sensory deprivation is simply delusional. And to believe in a God that would use her illness to make me a better person is the cruelest perception of a supreme being I could ever imagine. I love her unconditionally but I will go to my grave wishing her life could have been different.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      “…to believe in a God that would use her illness to make me a better person is the cruelest perception of a supreme being I could ever imagine.” – Yes, that is such an important part of this conversation for those who are believers. I too refuse to see a painful disability as a “gift” from God, even if it does have some uplifting and positive effects. As I wrote in my book, saying that God is able to use our pain for good is different from saying that God intends our pain.

  • Kate

    Wow. While I’m sorry to see the pain and anger in these responses, I think this is a really important conversation to be having, and shows the depth of misunderstanding on both sides. I was really surprised at Ellen’s post given the previous post about her loving acceptance and refusal to change what might be labeled “gender confusion” in her own son. In some cultures, both autism and “gender confusion” (or whatever other terms it is given) would be labeled disorders that should be medically “cured.” Yet despite the pain either “condition” causes – or the pain caused by the reactions to them from others – they are fundamental aspects of who is a person is, and I cannot imagine anything more painful than being told by someone you love that you shouldn’t be who you are. Talk about the ultimate rejection! But Ellen’s feelings as a parent are legitimate and I’m really glad that she expressed them. It shows nothing but love for her daughter that she would desire a life for her that includes less pain. And perhaps it’s important for those of us who tend to see this from the other perspective to recognize the love and good intentions of those whom we may experience as unaccepting or even hurtful.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Thanks for this Kate. I am aware of the irony of writing one day about how it breaks my heart that people see something bad in my son’s gender issues, and then another day about how I wish I could lift the burden of our bone disorder from my daughter. I see it this way: My son’s suffering is ENTIRELY caused by external sources. He is who he is, who he was born to be, and if culture and individuals in that culture would simply accept that—not make a big deal about what he wears or plays with, the way they don’t make a big deal about what my rugby-shirt wearing daughter wears—he would not suffer at all. On the other hand, my daughter’s (and my) disability will be painful and maddening and awful at times regardless of how others perceive or react to it. Broken bones and their accompaniments (casts, surgeries, etc.) are painful regardless of how other people react to them.

      I am tempted, as many people are I think, to separate disorders into categories, to say that disorders with clear, objective effects on the body should be dealt with differently than disorders that affect the brain, personality, preferences–those things we tend to see as intrinsic to the PERSON, not just their body, like autism. But I think that’s too easy, and in practical terms, inadequate. Because there will always be people with bodily disabilities, like mine, who say (as my friend Michelle does above) that their disability is so wrapped up with who they are that they wouldn’t want to change it for the world, and there will always be people affected by those brain-based conditions, like autism, who will wish for a cure—and vice versa. We can’t neatly divide various conditions into categories and expect everyone affected by those conditions to all have the same feelings about them. Landon, in this thread, is offended by the idea of “fixing” autism. Yet today I’ve also been talking with another person affected by autism who feels differently, and would pursue an autism cure if she could. Michelle and I have different perspectives on the bone disorder we share. And these differences of opinion have practical implications for things like reproductive technologies that offer to test embryos or fetuses for various conditions. I wish it were simple, but it’s not!

  • Jeannie

    Although I am not a regular follower here, I probably will be soon! I saw this link on Tim’s blog and find the discussion very relevant. I’m a parent of a daughter with Asperger Syndrome and a son with numerous disabilities including some traits on the autism spectrum. I’m also a Christian. So I really identify with the struggle surrounding whether I would want a cure for my kids. As evidenced by the responses above, this issue touches a sensitive emotional chord in many people. I do not agree with the idea (which you originally quoted) that wishing for a cure equates with wishing the person no longer existed. And I do not think that you were in any way putting down people with autism, saying those who don’t agree with you are wrong, or belittling anyone. I hate conflict and wish we could all get along, but I know this discussion is important and I appreciate your raising it and handling the comments with both grace and firmness.

    The only part of your post that stung, for me, was “My three dozen fractures, crooked spine, mismatched legs, and scars have made me who I am, in private and in public, inside and outside, JUST AS SURELY AS AN AUTISTIC PERSON’S INABILITY TO READ BODY LANGUAGE OR DISINTEREST IN OTHERS’ EMOTIONAL REACTIONS HAVE MADE HER WHO SHE IS.” The problem for me is encapsulating autism into such a limiting and somewhat stereotypical definition. The cliche “If you’ve seen one person with autism, you’ve seen one person with autism” applies here. In fact, some research is showing that people with autism and Asperger’s are highly attuned to/interested in others’ emotional reactions — often too much so — so that the “overload” is what can cause them to retreat or disengage. This is a fascinating counterpoint to the often robotic caricature of the autistic person.

    I also believe it would be difficult to quantify “just as surely.” Yes, your disability has made you who you are; I totally get that. But is it the same — “just as surely”? I don’t know. My daughter is who she is b/c of Asperger’s. She is also who she is because of being an introvert. And an artistic temperament. Etc. These aren’t really criticisms so much as just to say …. man, it’s complicated. You’re right, we can’t separate the physical from the emotional and mental and spiritual.

    Thanks for not shying away from the tough stuff. As Arnold would say, I’ll be back.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Jeannie, thank you for this generous and helpful response.

      I apologize if it appeared that I was stereotyping people with autism. I did not intend to do that. While not an expert by any stretch, I know enough families living with autism to know there is a huge diversity of experiences. In the sentence you cite, I was painting a picture of a theoretical individual with autism, and randomly chose two traits that are sometimes associated with autism for that theoretical individual. I did not mean to imply that I think all people with autism share these traits. My theoretical person with autism is not intended to represent all people with autism, just as I don’t present myself as representative of everyone with my bone disorder.

      And I would of course agree that our selves are influenced not just by whatever specific conditions or diagnoses we might have, but also by many other factors related to temperament and talents. I didn’t mean to imply that my bone disorder, or someone’s autism, are the ONLY factors or even the primary factors in who they really are. Rather, I was refuting a very common tendency in conversations like these to write off physical disabilities as “merely” physical, as having little or no effect on the inner person. In conversations around childhood disorders and identity, people so often want to contrast physical conditions with psychological or social conditions, and argue that conditions such as autism are fundamentally different than a physical condition because they affect the inner person. I don’t buy that argument. My bone disorder affects my inner self. And as I wrote in the response to Kate above, there are many people with physical conditions (such as Michelle in this thread) who would not seek a cure because of how that condition has become part of their true self. I think that the sticky, difficult questions around acceptance, identity, and cure are relevant for anyone with (or who has a child with) any sort of condition that makes them different than the norm, whether physically, emotionally, or psychologically. And I’ve chosen to engage those questions not only because I and my daughter live with such a condition, but because I have focused my career in recent years on looking at the difficult questions raised by reproductive technologies that offer parents options for making sure their children aren’t born with those sorts of differences.

      You have modeled a gracious response to ideas that you find difficult or disagreeable, and I am so grateful!

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  • http://www.savingdowns.com Mike Sullivan

    “But I’m not convinced that this job requires us to fully accept and love the extra burden of pain and difference that some children and their families must bear.”

    Actually, yes children with so-called differences, deserve our full acceptance and love like all members of the human family. It seems extraordinary to have Christain commentators suggesting anything other than unconditional love, which is love without any conditions attached to it. After all, the concept of difference is in ones own mind, who are you to say that we shouldn’t fully accept and love our children, as they are?

    What our communities need is advocates who accept our children unconditionally, not those so infer that their “differences” are a burden or Christian writers who support disability selective abortion under the guise of “choice” – selection is the correct term.

    Just accept children as they are, part of creation, and life would be much easier.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Note that I said “I’m not convinced that this job requires us to fully accept and love the EXTRA BURDEN OF PAIN AND DIFFERENCE,” which is very, very different than saying I’m not convinced we need to fully accept and love our children as they are. As many commenters have observed here and on my Facebook page, this is not a conversation of absolutes–either you love your child as he/she is OR you want a cure. You can simultaneously do both of those things.

      My daughter happened to be sitting here, and reading the title of my piece, said, “That’s a stupid question. Of course parents don’t want their kids to suffer. That doesn’t mean they don’t love them.”

      • http://www.savingdowns.com Mike Sullivan

        If you fully accept and love someone, then there is no concept of burden, just acceptance. Everyone suffers to some degree, so acceptance is better than resistance. In Christianity, suffering is a path to salvation. Modern culture goes against this, even to the extent of using the avoidance of suffering as a justification to taking the life of other human beings – hardly a Christain act, but quite popular these days.

        • http://timfall.wordpress.com/ Tim

          “then there is no concept of burden” – interesting philosophy. I bet Jesus felt the burden of saving us when he went throught the agony of crucifixion.

          “In Christianity, suffering is a path to salvation” – true, but not my suffering. It’s Jesus’ suffering that is the path to salvation.

          Blessings,
          Tim

          • http://www.savingdowns.com Mike Sullivan

            I was referring to one person seeing another as a burden Tim. Those who loved Jesus did not see him as a burden to themselves. So, I was saying that when we love another unconditionally, there is no concept of that person being a burden. Ellen was saying that families bear the burden of their child’s difference, I am saying that if their is unconditional love for that child, then the parent sees no burden.

            The question of suffering and salvation is a classic area of theological divergence in different paths of Christianly. It seems that it is best resolved through experience.

        • http://www.ellenpainterdollar.com Ellen Painter Dollar

          Yes, everyone suffers. Yes, suffering can be redemptive in a Christian way of thinking. And yes, our modern culture often elevates the alleviation of suffering to a higher value than it should be.

          However, Christianity is also a belief system that recognizes us as bodily creatures. Our bodies and brains matter in Christianity. Our bodily, psychological, and emotional suffering matters, and not merely for the possibilities it can offer for learning and redemption. Only a warped Christianity seeks out suffering, romanticizes it, or denies that it should matter. Christ’s suffering was redemptive, our suffering can be, but it is not a Christian notion to deny the reality and pain of suffering, nor the very human desire to alleviate it. It is also not a Christian notion to believe that OUR suffering leads to salvation. It might teach us a whole lot of things, and we ought to use caution when deciding how far to go to alleviate it, but we are not Buddhists. We do not believe in saving ourselves through suffering. Jesus already did that for us.

          Desiring a cure for a child’s painful, debilitating, or difficult condition is not in the least a non-Christian notion. Would you question a Christian’s desire to seek medical treatment for cancer that would lead to a cure?

          Also, I think that you’re allowing other conversations we’ve had here to color your reaction to this conversation. No one here is talking about taking anyone’s life. We’re talking about whether it is reasonable for parents to desire a cure for their child, and whether doing so somehow undermines their unconditional love for that child. Whether desiring a cure means that you wish to annihilate the child you have. My answer is no, it doesn’t. Again, this is not a case of absolutes in which doing one thing (desiring a cure) negates the other thing (accepting/loving the person who IS).

          • http://www.savingdowns.com Mike Sullivan

            The conversations are related though. The concept of a cure is underpinned by the assumption that something is wrong and needs to be cured. Why assume that a condition like Down syndrome or Autism needs a cure, with the implication that there is something wrong, when we could just learn to accept these people as being fine the way they are. And then the link to antenatal selection issue becomes clear, it is driven by the same notion that there is something wrong with the condition, and if it is not cured, it should be avoided by taking the life of that human being. It’s dangerous ground.

    • Jeannie

      You sound like a loving person, Mike. As a parent of 2 special needs kids I really grapple with the topic of acceptance. To take an example (which doesn’t apply to me by the way): if my child is born with cleft palate and there is surgery she could have to “fix it,” does acceptance mean saying “Yep, there’s something wrong, let’s face the truth and get the operation” or does acceptance mean saying “I love her as she is and I don’t think there’s any reason to change what God made”? The latter SOUNDS like unconditional love, but is it? So I don’t think acceptance is as black & white as we might wish. I accept (face the reality of) my son’s seizure disorder but that does not mean I reject the medication which is keeping him seizure-free. Seizures could harm him. I don’t want him to have them if they can be avoided. In this case, acceptance means saying yes, this is the reality — and THEN asking “Do I have a task here to try to change this reality? What am I called to do here?” Maybe nothing can be done. Maybe something can. But if there is something for me to do, I want to find out and (God helping me) do it. Acceptance is saying yes — but ironically, it can also mean saying no.

      But I don’t want argument to blur the importance of what you’re saying: that our world would be better if there were more love and acceptance of persons in all their variety. To that I can say amen.

      • http://www.savingdowns.com Mike Sullivan

        Thanks Jeannie. I find the essence of the problem with this type of writing is that it takes an experience with a physical disability and then applies concepts like suffering and curing to what society labels an intellectual disability such as Down syndrome or Autism. It is quite offensive really to use terms like suffering to people in these situations. Sure, there may be physical aspects to those situations that are less than desirable (some would say those physical situations cause suffering), and it would be right and proper to fix, say a heart defect, as we did with our daughter who has Down syndrome. But there is no suffering from the fact that someone just has a naturally occurring intellectual difference in itself. The concept that someone with Autism or Down syndrome suffers is really just a social context, it has nothing to do with the individuals own experience, which is up to them – as Landon was pointing out. My daughter does not suffer from having Down syndrome, and I wouldn’t change her. She is not a burden to me. So that is where I part with Ellen’s views.

        My concern with this type of of writing is the way the concept of suffering is applied to intellectual difference. In the age of genetic technology this is just plain dangerous stuff and the Down syndrome community in particular is being targeted and harmed because of these false social constructs. It is so proballamatical that we see Christians writers supporting disability selective abortion, a concept that is not welcome in our community., when they have little understanding about our families.

  • http://www.ellenpainterdollar.com Ellen Painter Dollar

    It is indeed dangerous ground, and difficult, because these conversations require us to consider different viewpoints that are in tension with each other–that can even be held simultaneously by the same person ( e.g., I love my daughter just as she is; I wish for a cure for her disability). I think we have to recognize that tension, and accept both notions as authentic and real and valuable ( rather than demonizing one or the other) if we hope to help people make truly informed decisions and realize the myriad implications of those decisions, whether we are talking about seeking a cure or making reproductive choices.

    • http://www.savingdowns.com Mike Sullivan

      Yes it is difficulty Ellen. Not only do our conversations have different viewpoints, but the language sometimes disguises the truth. Take your term “reproductive choice”, which sounds very nice, harmless and politically correct. To me that means choosing to reproduce – whereas I know that in most situations you are talking about disability selective abortion. As an advocate for people with Down syndrome I don’t recognise the right to take a human life because that being has Down syndrome, so I don’t accept that notion although I understand that many do.

  • Arthur

    Hi Ellen, I am on the spectrum diagnosed later in life, and would have never considered my self either disordered or disabled, but clearly different in what seemed like significant ways, that others were able to discern, sometimes more than myself. However, I worked with and even was privileged to supervise some in accommodated work programs, that were much more severely impacted by Autism, that clearly were severely struggling with the disorder on an almost continuous basis.

    The people on the spectrum that enter into these internet conversations are rarely like those that I encountered in real life that were more severely impacted by the symptoms of autistic disorder, as well as intellectual disability and other associated co-morbids.

    The viewpoint of those with an aversion toward the term cure as elimination of existence are often those that identify in their prime, diagnosed with Asperger’s Sydrome, or another “milder” form of an Autism Spectrum Disorder. I can empathize partially with that viewpoint, as I too would have never imagined a remediation for any symptoms I had when I was younger, but clearly could see the difficulties of others identified with Autism, that had a condition that was clearly much more severe than my social communication difficulties and special interest obsessions that interfered with relationships with others more than anything else.

    One other point that you might find interesting, associated with your son’s differences is that Asperger’s syndrome has recently been associated in research with androgynous features in both males and females diagnosed with that condition.

    Not only that, but Asperger’s syndrome has recently been associated with gender neutral structural characteristics in the brain. These associations have not yet been identified among those who are more severely impacted by Autistic Disorder.

    There are clearly different underlying factors among different subgroups and individuals on the spectrum. Some with “higher functioning autism” have been determined not to share the same indifference toward the emotions and social overtures of others, however these problems are identified in and reported by others on the spectrum.

    As you know from your son’s experience culture is not always kind to those that don’t meet society’s gender expectations, but for those individuals with Asperger’s syndrome, androgyny can be a source of bullying, and social isolation from others in itself for those with that associated difference. At least in some cases, it could be a significant source of drawing into oneself, becoming more socially isolated, and focusing on other activities in life other than people, as a defense mechanism for survival.

    Some of what seems to come across as anger and bitterness may not just be an issue associated with Autism, it may also be related to the issue of not being accepted for other reasons over the course of a lifetime like being bullied and not accepted by peers for having androgynous features. The last thing that some people that have dealt with that issue all their life want to hear is that they need to be cured of anything as there has been a continuous suggestion by some that they need to change what they cannot change, since they were a young child.

    As one can easily see this “cure” aversion and autism is extremely strong among some individuals diagnosed with Asperger’s syndrome as a very emotional issue, and it is for some others on the spectrum, and some off the spectrum.

    I hope this perspective can potentially provide a potential perspective of some others, of part of where some of what comes across as bitterness and anger may originate from, that can make the term “cure” metaphorically a four letter word for some, as the same kind of attack on their identity, from others, potentially experienced from issues associated with androgyny across the course of a lifetime.

    And this is not directed at any specific person in this conversation, as I have observed these common elements reported among many people self identifying with Aspergers syndrome, in many online opportunities for communication specific to people on the spectrum, and in real life. Not only that but an expert in my area on Aspergers Syndrome, has identified the difficulties that many children, adolescents and adults diagnosed with Asperger’s syndrome report with androgyny and gender identification issues, for years now, and continues to attempt to help them overcome psychological issues associated with the bullying and identity issues some identify in their life experiences.

    There is truly nothing simple about this issue; this is only a tiny slice of factors that make this autism experience so different for some people and for those that are associated and care for those that experience it. The diversity among those identifying with the disorder, is as complex as what could be seen in any group of individuals.

    You seem to be a unique person that exhibits a great deal of patience and tolerance for diversity of perspective and viewpoints of others. You would make a great moderator for any autism online community that could likely make many people feel more comfortable and accepted there, that might not ordinarily have that opportunity in life :). But it seems you serve that purpose here. Best regards, if nothing else it seems like challenges in life can bring about more compassion for others in life, if acceptance for one’s self can be found and continued.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      This is amazingly helpful, Arthur. Thanks.

      • Arthur

        You’re welcome.

        I find it disturbing to see that Landon Bryce a person that commented above headlined you on his Thautcast.com website, that is portrayed as a resource of support for parents and people on the spectrum, describing your communication here as condemning the neurodiversity movement, with a claim that you are lying on this blog, from quotes he presented from it there.

        I thought it was only fair for you to be aware of it, and have the opportunity, if you wanted to defend your character there. He also linked it on the accompanying thautcast facebook page, where one can see the comments of people responding to your article there, not all of which were negative. I have no idea where he got the inference you were lying and condemning the neurodiversity movement in your blog here, I suppose only he can answer that question.

        Again, best regards, and I think this has been a very enlightening discussion here.

        • http://www.ellenpainterdollar.com Ellen Painter Dollar

          I read it. I won’t respond, because I am pretty sure it won’t help. I don’t see how any reasonable person can get condemnation of the entire neurodiversity movement from what I wrote here, and I don’t believe that saying “I’m not lying” will convince someone who believes I’m a liar. I’ve been called worse. Thanks so much for reading and adding your perspective.

          And for anyone who has come here from Landon’s post, I hope it’s obvious that this post is not even primarily about autism, much less a condemnation of the neurodiversity movement. I’m working on a post about why I think it is sometimes necessary to discuss various conditions, as varied as my bone disorder and autism, together– why my experience living with a bone disorder is relevant to those living with autism (& Down syndrome and myriad other conditions) and vice versa. While I write from the perspective of someone with a physical disability, I have been researching and writing about broader issues around disability, parenting, and culture for many years, and I think there are times when we have to talk about a variety of conditions within the same discussion and context, for very practical reasons. More on that to come in another post…

          • http://www.schuylersmonsterblog.com Robert Rummel-Hudson

            I think that’s an important distinction, and one that is very frequently lost in discussions of disability, particularly when autism is part of (but not primarily) the mix. Yes, there are commonalities among what we all experience as people with disabilities, and as parents and friends, but the fact remains that the autistic perspective does not always (or even mostly) represent a kind of universal disability Truth-with-a-capital-T. There should be enough oxygen in the room to discuss the various perspectives as they apply to differing disabilities and differing experiences, for all of us involved.

            Where Landon is concerned, I often think of the old saying “when all you have is a hammer, every problem looks like a nail”. I’ve been hopeful that his approach will become more nuanced and his perspective might evolve into something less hostile to parents and more inclusive of different types and levels of disability. I remain hopeful for him still.

    • Amy Sequenzia

      I am the “severely affected” or “low functioning” and I do not want or need a cure. I have been me for too long and I feel good, even with all my needs. I also look very disabled. I have been writing about how my life is not a tragedy for a long time and I agree with Landon. Every time I tell parents “I am like your child”, hoping they will move from grieving to acceptance, only a few listen. We do not hate parents, we want to be valued as we are.

      • Arthur

        I think it is wonderful that you feel good with all your needs, however your description of how you feel about your life experience is only specifically relevant to your life experience, not that of the diversity of the spectrum that exists, where each person is unique, and has their own personal set of challenges and/or strengths. And, it’s not just an anecdotal statement, as currently under the DSMIV-TR criteria there are 2027 potential diagnostic criteria combinations that can result in a diagnosis of Autistic Disorder, with potentially as many or more underlying different causal factors at play.

        Two people diagnosed with either Autistic Disorder or Autism Disorder can be assessed with completely different observable behavioral impairments. So, it’s really not fair for anyone on or off the spectrum to suggest they know how another person on the spectrum feels or experiences life, particularly if they have not met them, when they happen to share a diagnostic label that actually reflects a spectrum of behavioral impairments not necessarily the same impairments.

        That does change to some degree with the new DSM5 criteria for ASD, as requirements for social-communication become mandatory per impairments in social-emotional reciprocity, developing and maintaining peer age appropriate friendships, and non-verbal communication. Currently none of these individual criteria impairment requirements are mandatory, but instead optional as long as 2 out of 4 social interaction impairments are met for a diagnosis.

        Also, it is at times not fair to assume what someone’s emotions are going to be in the near future from their expressed communication when they vent over the struggles in their life. The internet is a place where many people share their struggles for emotional support. Life is full of challenges, grieving, and acceptance of change. But, support from others including sharing of experiences that are truly difficult in raising children with or without disabilities is vital for some people to move through their emotional difficulties to a more peaceful place.

        It’s always good to hear that another person has faced and overcome their own unique set of challenges in life to find peace in life, however one cannot project their experience of life on another person, as no two life experiences are the same; the most anyone can do is to attempt to empathize and share compassion both with the perceived differences and commonalities of life experiences.

        I can easily admit that I have often fallen short in this area in meeting the emotional support needs of others, as I often want to solve an emotional support issue with logical analysis, rather than just be there to listen, attempt to empathize, and offer words of compassionate encouragement.

        People on the spectrum need others to listen to their challenges in life, as well as their accomplishments, but parents of children on the spectrum facing challenges with their children, have these emotional support needs as well. Sometimes all they want is someone to listen to their difficulties for support, not someone to tell them how they should feel, and particularly any criticism of them as being human expressing emotions which include anger, grieving, depression, and acceptance. Sometimes there is no solution but time and the natural human emotional process of moving into a more peaceful place. Support from others, including just listening is often the medicine that moves the process on to a better place.

  • http://www.ellenpainterdollar.com Ellen Painter Dollar

    Hey Mike– I think it is clear that you and I have different vantage points. But I have to ask you to give me a little credit here.

    - While I obviously write from my own experience, I don’t write in a vacuum. I talk to people living with Down syndrome and autism. And guess what? Some of them experience suffering that is not solely caused by an unwelcoming culture. And as I have said over and over, ALL genetic conditions, whether physical or brain-based, are experienced in different ways by different folk. There are those with OI who feel as you do, that their condition should be accepted, not cured. And those living with, say, autism who long for more effective treatments and cures.

    - I have wriitten that Down syndrome may be a poor proxy/ example for conversations about reproductive technology and screening because it is not necessarily a condition that causes intrinsic suffering.

    - I do not support disability selective abortion. For various practical and legal reasons, I support legal abortion within some limits. Because it is a fact that some people will use that legal right when a fetus is prenatally diagnosed, I support and host informed and robust conversation around the topic, in part because I know that people do not often get the opportunity for such conversations in clinical settings. That conversation cannot simply write off legitimate and heartfelt parental concerns with their child’s potential suffering, any more than it cannot simply write off your and others’ legitimate and heartfelt concerns with how children are accepted just as they are.

    You have been reading my stuff long enough to realize I don’t do black and white. Please stop responding to me as if I do. I do not have a position other than that we MUST talk honestly about these things and make room for the very difficult questions raised.

    • http://www.savingdowns.com Mike Sullivan

      I’m happy to accept that we have different vantage points Ellen. I don’t buy the “child’s potential suffering” argument when it comes to intellectual issues, which is a common thread in your writing. It doesn’t make any positive contribution to the valuing of our children’s lives, so it’s where the discussion ends for now.

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  • http://www.elizabethaquino.blogspot.com Elizabeth Aquino

    I am new to your blog (through Louise Kinross) and found this discussion fascinating. I haven’t read Solomon’s book, yet, and I do look forward to doing so, but what strikes me right now as the mother of a child with both physical and intellectual disabilities is that at some point in the eighteen years of mothering her, I have grown quite adept at holding two very opposing thoughts at once. I’m not sure if this is a character trait or something honed from experience, but I know that I am able to wish with all my heart that my daughter had no seizures and was able to talk and walk freely and be more engaged with the literal world around her and also exult in her alive-ness, her ineffable grace, her being just as she is, because of who she is.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Yes, I think you’ve hit on the essence of this conversation, and why it can be so hard. It’s not a matter of black and white, either/or, but of both/and. It is possible to love and cherish how things are while also dreaming and hoping and even planning for how they might be different. This is true in many areas of life, isn’t it? We are grateful for and accepting of what is while also thinking of what could be.

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