Special needs adoption from a Jewish perspective.

Special needs adoption from a Jewish perspective.

Sunday, February 2, 2014

The teenaged baby

Yesterday, I was blocked on a blog.

The blogger, a very popular figure in the special-needs adoption community, posted this video of her adopted daughter:



The girl in the video is one of the survivors of the Pleven orphanage in Bulgaria. When she came home last year, she was severely malnourished, "literally at death's doorstep." She was 14 years old, and weighed 14 lbs.  The Salems have done amazing work in rehabilitating her, supporting her transition to good nutrition, and showering her with love and nurturing.  This video is, in fact, a testament to her physical and emotional healing.

Why, then, was I blocked?

My objectionable comment (which, I grant, allowed room for misunderstanding), was: "I know she is severely delayed, but isn't it still inappropriate to tickle a teenaged girl's chest?"

I need to clarify again, that I do not believe that there is any untoward intent on the part of the dad in the video. He sees her as a baby, and treats her as one. My question is not about his intent, but about her personhood. How do we differentiate between the ways in which seeing her as a baby is appropriate, and those in which it is not?

This video brings into focus a question which comes up not only in the adoption community, but in the larger disability community as well.  To what extent do developmental delays warrant infantile treatment, and at which point should people -- even those who are severely delayed and limited -- be accorded more mature treatment?

This is seen in recent stories where young adults with Down syndrome have sought to get married.  In a recent story (which I will link to when I find it...) a couple with Down syndrome had a symbolic wedding, only to go back to their respective group homes, since neither one offered them the possibility of living together as a married couple.  Similarly, an adult woman with Down syndrome sued her own parents for the right to determine her own living arrangement.  Frequently, such individuals are confronted with the objection, that since they are developmentally delayed, they should be treated as minors, according to a medically-determined "developmental age" which may be anywhere between 6 and 12 years old.  Our society is slowly learning that "developmental age" is not so clear-cut.

This video appears to me to show a similar problem.  This girl is developmentally a baby.  She does not walk or talk, and her understanding of her surroundings is extremely limited.  However, with the good nutrition she is now receiving, her body will probably go into puberty mode soon.  It is possible that it is already doing so.  What is appropriate in relating to an individual whose body might be ready to respond sexually, but the rest of whose development is still in infancy?  Clearly they need to touch her to bathe and diaper her, but that is routinely done with adults in medical settings, with clear understanding as to what is and is not inappropriate touching.  A child like Hasya in this video, however, presents like a baby, which is why the commenters were aghast that I would see anything questionable about this tickling. Perhaps they are right, and Hasya has not yet reached the point that body boundaries are appropriate.  The question still stands:  How do we decide? Where is that line?

Here, in contrast, is a video put out by a charity working to bring specialized therapists to Ukrainian orphanages and institutions:


Notice that the caretaker is tickling "Natasha" on her belly and armpits, but avoiding her chest entirely.

One might say that I have no business commenting on this, since I do not have a severely delayed, post-institutionalized child at home.  I do, however, have 3 daughters, and I know that with each of them, we established body boundaries several years before any outward manifestation of puberty appeared.  I know that tickling, say, an 8-year-old girl on her chest like that would feel very wrong.

Finally, one of the other commenters wrote:
Hehe I can just hear her saying "Papa, stooooop" while trying to catch her breath between giggles!! SO precious!! 
At which point, for a severely delayed child, does No start to mean No?


15 comments:

  1. This is pretty much why I hate the idea of developmental age. You can take a matrix (which in and of itself is subjective, culturally biased, and limited), and decide a person's developmental age, by to what end? I understand why it helps teachers and other care providers determine services. But the fact of the matter is, a human being who has been on this earth for 14 years, has been on this earth for 14 years.

    I don't know the answer to this, but I think that the very idea of thinking of a teenager as developmentally a baby is going to be avery slippery place. I'm sorry you got blocked before you could have that discussion.

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  2. Thank you!

    I think that, just as we understand the idea of multiple intelligences undermining a singular IQ, the different axes of development (including the cultural/subjective elements you mention) undermine a singular developmental age.

    I notice that there are several anonymous up votes on my comment, so I guess I am not the only one who is just a bit creeped out by this.

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  3. Exactly. And as an example, I will use my own son. He is 14 months old, and hasn't figured out the pincer grasp and doesn't yet pull to standing. He doesn't have any words, but he does sign for milk. He eats table food (even steak) and communicates to use the potty (he lets me know when he has to poop). So in his eval from EI, they average all that stuff and come up with a developmental age. But is he actually that age, or does that number actually give a real picture to who he is? Not really.

    Anyways. This is a peeve of mine, as you can see! Maybe even if you're not in the conversation, it'll happen after your comment and that's worthwhile, I think.

    ReplyDelete
    Replies
    1. Your son is adorable! (As are your daughters, of course)

      Very impressive about potty readiness! Are you doing Elimination Communication with him explicitly, or did he figure it out on his own?

      I suspect that he probably understands much more language than he uses.

      I think averaging the numbers undermines the usefulness of understanding and working on the child's individual strengths and weaknesses.

      When my older children bring home report cards, I tell them I don't worry so much about the actual grades, but what feedback they are getting for making improvements. Same idea.

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  4. p.s. The video made me uncomfortable too!

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  5. HI there,

    I read the original posting as well on Adeye's blog...and see that you have a point.

    However, you did leave some information off of this post. It is worth mentioning that the original posting was to show a "before" and "after" video. The "before video" showed the terribly sad nature of the little girl literally starving for food, water, and affection in an orphange....in contrast to the happy well-fed little girl in the 2nd video, which you attached here.

    In your desire to share your knowledge, you skipped over the entire nature of the post. And were offensive to the blog writer.

    One might say that Adeye was too sensitive to your comment. However, it is often the sensitive people that reach out to take in these little ones. So it comes with the territory.

    Empathy is putting yourself in someone else's shoes. So if you can imagine that you are a mother who is super excited to show how well her very much loved little daughter is doing.
    And then someone posts just a one liner...nothing positive..just a critical statement which in essence, called into question her husband's character, as well as the families.

    Your comment totally missed the whole point of the blog posting.

    By leaving out any kind words, and just speaking your knowledge about a situation - makes you seem unkind and unfortunately arrogant.

    I don't think that you are so unkind...but not hearing your voice...the typed words do come off as rude.

    Anyhow, perhaps this posting will be helpful to you. I would wish you the best...and in so doing...I would caution you to beware spouting off knowledge and missing out on relating to what folks are saying around you.

    ReplyDelete
    Replies
    1. With all due respect, I gave Hasya's background in the first paragraph after the video, including a link to the history of Pleven, and full credit for the amazing work that the Salems have done. I also owned up to the curtness of my initial comment. Being summarily blocked meant that I was unable to post a followup comment apologizing for my ambiguous question. Adeye is entitled to moderate her blog as she wishes. I welcome dialog here, and in fact invited her here to weigh in. I have no intention to block anyone or delete comments unless they are way beyond the pale.

      Delete
    2. From Isaiah 58

      "Indeed you fast for strife and debate....

      Is this not the fast that I have chosen:
      To loose the bonds of wickedness,
      To undo the heavy burdens,
      To let the oppressed go free,
      And that you break every yoke?

      Is it not to share your bread with the hungry,
      And that you bring to your house the poor who are cast out;
      When you see the naked, that you cover him,
      And not hide yourself from your own flesh?

      Then your light shall break forth like the morning,
      Your healing shall spring forth speedily,
      And your righteousness shall go before you;
      The glory of the Lord shall be your rear guard.

      Then you shall call, and the Lord will answer;
      You shall cry, and He will say, ‘Here I am.’

      If you take away the yoke from your midst,
      The pointing of the finger, and speaking wickedness,

      If you extend your soul to the hungry
      And satisfy the afflicted soul,
      Then your light shall dawn in the darkness,
      And your darkness shall be as the noonday.

      The Lord will guide you continually,
      And satisfy your soul in drought,
      And strengthen your bones;
      You shall be like a watered garden,
      And like a spring of water, whose waters do not fail."

      Adeye with not 1, not 2, but 6 special needs adoptions...has chosen the better part of this passage.

      Delete
    3. Thank you for this D'var (teaching)! Indeed, I have long admired Adeye, and have found her journey very inspiring. Let me, then, reply from Proverbs 9:

      7 Whoever corrects a mocker invites insults;
      whoever rebukes the wicked incurs abuse.
      8 Do not rebuke mockers or they will hate you;
      rebuke the wise and they will love you.
      9 Instruct the wise and they will be wiser still;
      teach the righteous and they will add to their learning.

      Adeye is entitled to reject my question as rude. She is entitled to block me from her blog as she pleases. I should hope that she is wise enough to see past that, and examine whether I, in spite of lacking similar experiences, might still be able to offer her a valuable perspective, whereby she can become "wiser still".

      Delete
  6. Thank you for your note about admiring Adeye and Proverbs 9... Proverbs is one of my favorites.

    And yes...you are right we should receive correction so we can be wiser still. I also can learn from this. I just think there is more diplomatic methods..

    The other side to this coin is...

    Proverbs 16:21
    ...sweetness of speech increases persuasiveness.

    and there is also
    Ecclesiastes 7
    There is a time to keep silence,
    And a time to speak;

    and Eccl 10:12
    The words of a wise man's mouth are gracious.


    May we be willing to learn, willing to accept rebuke and careful to be gracious.

    ReplyDelete
  7. So I'll just chime in my gut response here:
    I don't think it's at all inappropriate to tickle a baby from head to toe. I don't think it's at all inappropriate to tickle Adeye's little daughter from head to toe. It didn't make me feel uncomfortable at all. It doesn't make me feel uncomfortable when my own young daughters run around with or without their clothes, because they are blissfully unaware, though as they reach five or six years old... and their bodies grow larger, I start to teach them about modesty. I think we can all see how tiny little Hasya's body is, despite her vastly improved healthy and well being. Her body still looks like a baby's, she still thinks like a baby... why everybody is all up in arms because she has lived for fourteen years is confusing to me. Especially since it is judgmental towards somebody over something that we clearly don't know the details about. I think judging somebody over something so small makes everybody else feel unsafe sharing even the most innocent thoughts, photos and videos from our family. Adeye... if you're reading this... please just let this judgmental attitude slide away and don't read it any more! I trust you to know your daughter best; including what is appropriate.

    ReplyDelete
    Replies
    1. Thank you for your input! Would you feel differently if/when her breasts were growing? How about if/when she starts menstruating? If it were someone other than a parent doing the tickling? I am not being judgmental, and sincerely regret making the original comment without thinking through how it would come across. This seems to me an ambiguous area that most people would have difficulty making a hard-and-fast rule on. As I point out, infantalizing people with developmental disabilities is a common phenomenon. Clearly it is difficult to avoid in many circumstances.

      Adeye, if you are reading this, please forgive my initial curt tone and extend me some "Christian Grace"?

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    2. As one of the people who commented earlier, I just want to clarify... I made the comment about a person being on this earth for 14 years, because I personally do not like that children with developmental disabilities are so often treated without regard to their real age. That was a general comment, and specifically said that I didn't know the answer to this particular situation.

      The video made me uncomfortable, but that isn't intended as a judgmental statement, but simply an honest one. That's the reaction I had when I saw it.

      If one is going to have a blog about ones children, then there are bound to be things that others interpret differently, conversations that aren't entirely love and hugs. I'd think those would be good things. Things that stretch everyone's mind and faith.

      This is from the perspective of a mother who also blogs but wasn't involved in the original post. Take care.

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    3. Thank you, Jisun! I know that the two of us have disagreed on some pretty emotional stuff on our respective blogs, and I admire your ability to navigate these issues with tact and respect, both for yourself and others. It is a rare talent, which I aspire to one day emulate.

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    4. Well, I figure I've been plenty willing to disagree with you, I might as well speak up when I happen to agree. ;)

      As for navigating issues with tact and respect, thank you. I think you do a pretty good job yourself. We all stumble, I hope that this all works out with greater understanding for all, not less.

      Delete

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