Having THE Conversation & Parenting

Emma not only gave me permission to write about this, but asked that I “put it on the blog.”  I posted a small portion of this conversation on Emma’s Hope Book Facebook Page yesterday.

Trigger warning:  eugenics, abortion

Yesterday morning I saw an article in National Geographic about the Seine and Paris that I thought Emma might enjoy reading, particularly since her grandfather, my father, was born and raised in Paris.  But as with any topic I choose I asked Emma if it was something she was interested in.

Ever the diplomat, Emma wrote, “I do want to talk about the Seine, just not now.”

“Okay,” I said, “what would you like to talk about instead?”

“I want to have the conversation about eugenics,” Emma wrote.

I was astonished.  After I’d recovered from my astonishment I thought of how I continually talk about presuming competence and yet am so often surprised by my daughter’s words.  I’ve come to the conclusion that one does not preclude the other.  I can presume competence and still be surprised by the things she knows and says.  In fact, if I asked a group of twelve-year olds to talk to me about eugenics, I’m guessing there would be several who would not be familiar with the word, let alone able to spell it correctly.

“What specifically are you wanting to say or know?” I asked.

Emma wrote, “What do you believe is right?”

I said, “I don’t believe eugenics is ever a good idea, because it is a desire to extinguish those believed to be lesser beings.  I think all human beings are valuable and should be treated with respect and equally.”  As I spoke I held the keyboard for her to respond if she wanted to.

Emma wrote, “I believe human life is sacred and people treat those who they think are different far worse than people who are like them.”

“Yes, I think you’re right,” I said.  “Do you worry about eugenics?”

“Yes,” Emma wrote, “because parents seem so upset when they find out their kid is autistic.  I worry that people like me will end up being aborted.”

Eugenics and abortion…  Now two topics I was completely unprepared to talk about.  So we discussed both.  I talked to Emma about prenatal testing and how such a test has not been made yet.  I explained that autism has not been found in one particular gene, but that researchers are finding whole clusters of genes suggesting that it will be very difficult to isolate one or even a group of genes that may or may not be related to autism.  We discussed abortion and how and why it is a complicated topic.  And we talked about the difference between abortion and eugenics and how the two can overlap, but that they are also not necessarily related.

As with any complex issue, this is where parenting can get tricky.  I asked myself, how much information is too much?  I do not want to be overly protective and try to shield either of my children from difficult topics, nor do I want to “feed” my children my opinions.  Instead I want them to have enough information so they can form their own opinions, even if they develop opinions I do not agree with.  I’d rather disagree and talk about that than have them believe something without thinking about it.

I told Emma that her concerns were one of the reasons I feel so compelled to continue writing and why I hope she will also continue to write so that “more people get to know someone like me.”  We discussed how people’s perceptions about autism and how the things we see and are told, all that inaccurate information, can cause people to do things they would not do if they were given a more balanced and informed view.

Emma then wrote, “…I will write about this more so other parents open their hearts and learn…”

Now I realize I am bringing up difficult and complex topics.  Topics many people have strong opinions about.  I’m actually not interested in getting into an ideological argument about abortion and a woman’s right to choose, however I am interested in discussing the ramifications of the current and ongoing conversation regarding autism.

Eugenics was not a topic I would have ever thought to bring up with my daughter.  Not only was it not something I’d thought to discuss, it is a word I did not assume she knew.  But, just as when she wrote to Soma a few months back that she had seen the Grammy’s, unbeknownst to me, my daughter hears everything that is said around her.   Emma wrote that she saw the Grammy’s while waiting in the airport.  I hadn’t even noticed they were being shown because I don’t pay attention to the television screens when we are in an airport, so busy am I with getting through security and finding our gate.

I am so grateful Emma is able to write about these things so that we can discuss her concerns.  How many people who are Autistic worry about being harmed or even killed because of their neurology?  How many are able to voice their concerns?  How many are worrying in silence?

Emma - April 2014

Emma – April 2014

24 responses to “Having THE Conversation & Parenting

  1. “… people treat those who they think are different far worse than people who are like them.”
    Emma. I’m designing a medieval trebuchet for a student to make this evening. So I’m taken up with feeling where the pivot/fulcrum of the catapult’s arm has to be.
    I read what you say here, across how I’m taken up in designing. It then seems to me that what you say here, is the pivot for everything important. It is the most helpful idea in understanding human affairs.
    Bravo Emma.

    • Colin I just love that you’ve connected the pivot of the catapult’s arm of a trebuchet to the words Emma wrote! Oh how I love that. I am visualizing her words being flung across vast expanses and used, instead of to destroy the enemy, to seed the great unknown fields of knowledge.

  2. Emma, I am always learning from you. Reading your insights makes me a better parent to my four year old twins who are autistic. Thanks for sharing, as always.

  3. Emma, a few nights ago a friend of mine, who was also our organist at the church I go to, suddenly and unexpectedly died. On Sunday, Pastor Jane said: “At times like this I just can’t find the words to say what I feel, so let’s just be silent for a few minutes and let our thoughts from our hearts be our expression without words.”
    I immediately thought of you, Emma, and how difficult it is for you, and even for so-called neuro-typicals, to express thoughts and feelings adequately without words. So instead of thinking of our friend, Rhoda, I thought of you and sent loving vibes across the miles that separate us, so that you would know that I love you.

    Granma

  4. My son, Patrick, who has Down’s syndrome also had a version of this discussion with me. There are genetic markers for Down’s Syndrome. Pat has definite ideas about the value of his own life and the lives of others.
    (I posted his opinion in a past comment.) He has a lot of joy in his life and he brings a lot of joy into our lives. The world would be a lot worse off without the likes of Patrick in it. When we first adopted Patrick, someone told me that people with Down’s syndrome are sent into the world on a mission of peace because they are very much needed especially now.
    I know Patrick brings peace, faith, hope and unconditional love into our lives. He and His sister, Alice, who also has Down’s syndrome, and Katrina, our daughter with autism each teach us daily that a person is a person no matter what their neurology. Their unique perspective clarifies everything, and helps us remember what really matters. Keep up the good work Emma. You are a blessing.

  5. Yet again Emma has surpassed my expectations, showing knowledge and interest beyond her years. The more she writes here, the more I think of her as a prodigy.

    […] I want them to have enough information so they can form their own opinions, even if they develop opinions I do not agree with.

    I cannot adequately express how much I agree with this. Freedom of thought, of conscience, is one of the cornerstones of an individual’s human rights.

    • One of the hardest things I think about being a parent is letting go… of everything! And interestingly enough, letting go is also one of the most exhilarating feelings a parent can have. Or at least this has been my experience…

  6. I’ve got a lot to say on this subject. So much that I wrote a post about it. Maybe tmw?

  7. I also worry greatly about the violence autistic people face today and the far greater violence we might face in the future. There is a lot of hate speech around, and words can change to actions far too quickly.

    Autism cannot be determined by genetic screening, but it might be possible soon. If this happens, it is pretty much certain that it will be used against us. This is the clearly expressed goal of organizations like autism speaks: find a cause and then exterminate autism. Once abortion is accepted, infanticide is the next logical step. Some philosophers and doctors already support this.

    It is deeply sad that in our supposedly civilized age some people are still denied humanity. Have we learned nothing? History shows that when any people, be it blacks, or jews or the disabled, is dehumanized, it always leads to terrible things.Humans are only able to kill when they convince themselves that their victim is not human. All human life is sacred, and all destruction of human life is a terrible crime. Abortion is the last vestige of this mentality that has caused so much terrible suffering.

    This post was pretty depressing, and i don’t want to give the impression that all is hopeless. This is only one possible future, and far from the most likely one. There are many reasons to be optimistic. Autism is likely understood and accepted now by more people than ever before. And there is no reason why we can’t throw ableism into the wastebasket of history like racism and chauvinism were.

    • “…there is no reason why we can’t throw ableism into the wastebasket of history like racism and chauvinism were.” I hope so, though both racism and chauvinism are still rampant, both are shifting!

  8. Shannon Jenkins

    I know I am new to this and, personally have moral and religious issues with eugenics and abortion… yet, I worry SO much for my daughter… I have a hard time finding words to express the deep feelings of responsibility, guilt, & fear I feel. Though only 3, she is SO dependent on myself and my husband (a disabled Army vet). Though I can’t imagine life or a world without her I worry that she will one day face a life without us. As we are older, have little family and less friends I worry what that will be like for her… does that make sense?

    • It does make sense, Shannon Jenkins. I am closer to independent than anyone could possibly have dreamed for me at that age–heck, even ten years ago. And yet, when my parents try to talk to me about a future without them in it, I cannot stand the thought and will not imagine it. And I won’t right now, either. No way. But I am blessed to have found community, and I am so glad you have found us too. Your daughter will never be alone, because we are interdependent in life. And please thank your husband for his service for me. Love, Ib

      • Shannon Jenkins

        Thanks for the kind words, Ib! I do feel blessed to have found you all here and also feel blessed that my husband and I don’t work outside the home… it gives us that much more time to be with our daughter. She has a happy disposition 90% of the time… and that is what I want for her but even more so! Perhaps I have TOO much empathy at times (her therapists have told me this) but it breaks me to see her upset. 😦 Just today I picked her up from preschool and she came in from a PT session crying and overstimulated. It causes me great dilemma because I don’t always know when to push her (if at all) or when she might need rescuing and I want SO much for her to tell me! I don’t know if its typical of autism but she has said 3 or 4 words… but then seems to forget them altogether for months or more… its like a spark on an ember that dies out before fully igniting… it pains me… its not that I pity her, I believe… I know she is smart and beautiful and capable and full of joy. But the world is hard and cruel and unfair… and I don’t want any of that for her!!!

        • What Ibby says is wise, and I could not add to what she says.
          On the empathy and language side of things. You cannot have too-much empathy or be too-empathetic. Empathy can then be a burdensome gift. You have to process and respond to what you are empathetically aware of; when the human world around you is watching a very different film and working to a very different script. Standard words don’t then serve the empathetic person too well; they expressing so little of what empathy makes one aware of. So a developing autistic child can pick up words, find them not too useful, and eventually lay them down again.
          In autistic silence, a language for processing and articulating perspective on experience, can and will develop; albeit experience managed by that private language can run into jagged moments with a contextualising human world which is using its language differently. What Emma is then demonstrating is that this private language, it managing an empathetically rich experiencing, can make it through to communicating in ways which put it on a par with mainstream language-usage. What Emma is then showing, is that this communicating arises out of an empathy-rich autistic well-spring. Emma bends semantics and syntax to her own expressive ends, thereby sustaining connection with her empathetic self. Emma’s language usage sees her preserving her autistic/empathetic organic strength and integrity: empathy as gift is then foremost; the burden of that gift is borne gracefully across an ever-emerging organically strong person.
          Your child will take in from you how you deal with your gift of empathy; perhaps as the most crucial part of your parenting. All will end well. We are building something of immense importance and strength, generation on generation.

        • Shannon – I wrote about exactly this a few years ago – https://emmashopebook.com/2010/11/03/autism-a-puzzle/
          Please remember that when I began this blog I was in “cure mode” so some of the early posts (the truly offensive ones I’ve deleted) reflect language I would not use today. But this blog is a story of evolution in understanding and as such (I hope) might be helpful to those just beginning.

    • Shannon – both Ib and Colin have been key players in my own understanding of autism and what this may or may not mean for my daughter. I can so relate to your fears. Not only can I relate, but what you’ve written here is something I might have written not so long ago. But and it’s a big BUT, do try to remember that we parents cannot predict our children’s future. Those terrifying scenarios are not fact, but our fears. When Emma was three I could not have predicted and would have disbelieved anyone who showed me a movie of her life today and all that she is writing and saying.
      Plan for the future as best one can, while staying firmly rooted in the present!

    • I was very dependent on my parents when I was three also. There were many things I could not do for myself. It was hard being 3. I wouldn’t want to be 3 again. I couldn’t easily make myself understood and if I wanted something I had little means of acquiring it — sometimes for very good reason. A 3 year old’s wants are not always (or even usually) safe or healthy or sensible.

      There are many things I didn’t learn how to do until I was older. Some skills, like washing my hair, came to me a decade later than they did to my peers. I live alone now with only my cats. It is not always easy, but I get by. I am going to be married. I am still disabled. There are still things I have trouble with that most people in their thirties do not have trouble with. But it is okay.

      I think your daughter will grow and change over her life and she will learn new things and she will explore her interests. Three is way too young to know who she will become. She will always be autistic, but she will not always be an autistic three year old. Someday, she will be an autistic teenager with skills that she didn’t have when she was three, and later in life she will be an autistic adult with skills she didn’t have as a teenager.

  9. Hi Emma. You keep winning hearts and minds because you are a winning winner who wins! Are you still into singing too? I hope so because you are also awesome as a singer…but it makes sense if there is less time. I miss you! Your writing inspires mine. Love, Ibby from Ibbia

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