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?

What makes my kid so awesome?

Is my kid awesome because he is reading and writing early?

 ...Because she has a beautiful voice?

 ...Because he has amazing balance and coordination?

 ...Because she is deeply philosophical?

 ...Because he memorizes whole movies?

 ...Because she owns the stage?

 ...Because she is gorgeous?

 ...Because she writes beautiful poems?

 ...Because he has a rich imagination?

 ...Because she is talented?

 What if they were able to do none of those things? Would they still be awesome? Of course.  A mother sees her children as absolutely perfect no matter what their specific talents are. Or what challenges they face. Perfect not in the sense of not requiring disciplining, but perfect in the sense of being awesome.  Perfectly unique individuals, bundles of potential.

Potential.  What does that mean? If a person's potential is extremely limited, and he achieves it, then it is awesome.  If a person's potential is great and he squanders it... not so much.  Can we really look at people for their own individual potential and appreciate them for their own sake?

Perhaps the reason people have trouble with disability is that we want to be appreciated for our own potential, without regard to how well we live up to it. Easier that way.  Recognizing that a person with disabilities is living more fully to his/her potential forces us to face our own laziness.  Not a comfortable place to be.

Of course, we don't actually know what anyone's potential is, disabilities or not.  And so many of us have invisible disabilities.  And pretty much all of us have challenges that we must overcome in order to reach our potential.  So the concept of "disability" is not that distinct.  It's a way of making the rest of us feel normal.

What is a baby?

Why are so many children waiting year after year in foster care, orphanages and institutions around the world?  Why, when so many childless couples wait year after year, too, spending tens of thousands of dollars on infertility treatments, surrogacy arrangements, and infant adoptions?

Of course, the answer is that parents want, first of all, a child who is like them, and of them.  Genetically related.  THEIR KID.   If not, let it be an infant, so the experience will at least approximate a biological child arriving.  THEIR EXPERIENCE. All about THEM.

What about the kid?  Does a child come into the world for the benefit of the parents, or are the parents there for the benefit of the child?  A secular worldview tries to collapse these perspectives onto each other:  Having the child is the parents' choice, but having made the choice, the parents have the responsibility to provide the child's needs to maturity.  This worldview allows for great license for amateur eugenics, as parents select bio-parents from sperm-banks or surrogacy registries, or selectively abort fetuses of the wrong gender, or with inconvenient abnormalities.  How does one "flip the switch" from thinking of the child as a product to be procured to specifications, to accepting the child for who he/she is, with all the vicissitudes of a normal childhood and adolescence?

A religious worldview can sometimes bypass this, by recognizing all children as "gifts" from G*d.  We do not pick and choose our gifts.  We do not return a gift that has been specially ordered and personalized for us.  We do not discard gifts that have been given to us by those whom we love and esteem.  If such a gift is bestowed upon us and requires care and nurturing, we will do all in our power to prove ourselves worthy of it.

In the second blessing after the Shema, we read,

And you shall inscribe them on the doorposts of your house and on your gates - so that your days and the days of your children may be prolonged on the land which the L-rd swore to your fathers to give to them for as long as the heavens are above the earth.

I love that the inheritance is passed from our fathers to our children.  We have the responsibility to maintain for our children that which we might be tempted to dispose of ourselves.  This is echoed in Khalil Gibran's famous poem:

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.

What, then, of all those waiting children?  The older children, the sibling groups, the children with physical and developmental disabilities, with delays, with chronic medical conditions?  Whose gifts are they?

I am currently watching two adoption stories unfold, featuring older children with Down syndrome and severe institutionalized effects.  Both families are large families which have adopted before.  Both families see these children, long rejected by conventional adopters, as precious gifts every bit as uniquely bestowed upon them as the children they have conceived and birthed themselves.

Here are the Mussers, who have just completed their first trip to adopt 15-year-old Tommy, who is scheduled to come home in April/May.  They have nine biological children, ranging in age from 2 to 18.  Their youngest was born with Down syndrome.  Just over a year ago they rescued their daughter Katie from the Pleven orphanage.  At almost 10 years old, she weighed barely 10 lbs.  The story of her recovery and blossoming in the past year is nothing short of miraculous.

Here are the Salems, who are presently in the final stages of bringing home 14-year-old Hasya and 9-year-old Kael, both of whom have Down syndrome.  Like Katie and Tommy, these children have suffered horribly, not because of their disabilities per se, but because of how their disabilities are seen by a society that views children as valuable only if they meet its specifications.  Both are tiny for their ages, and severely delayed.  Hasya, like Katie before her, has not been permitted to grow beyond the size of a young infant.  She is currently struggling to gain nutrition without succumbing to refeeding syndrome.  Kael, who was in a different institution, is doing much better, though he is still only the size of an average 3-year-old.

These and other families are taking on the children whom they recognize as "the sons and daughters of Life's longing for itself", who welcome the children to come through them though they are not of them.


What is a baby?  A baby is a human being coming to the world, and meeting his/her family for the first time.  In reading various people's adoption stories, I am repeatedly struck by the idea that a child coming into a family - at whatever age - is in many ways like a newborn.  They may or may not be walking, talking, or toileting yet, but emotionally they are at square one.  Many families report very good results by "regressing" their new child, so that s/he can cover the lost emotional ground.  Katie, a year later, is in many ways comparable to a one-year-old.  In some ways she is way ahead of a one-year-old!  She has grown to the size of a 3 or 4-year-old, she is learning to toilet herself, and so on.

Russia is not likely to approve any new adoptions at this point, although it is hoped that the proposed amendment to make an exception for special needs will be passed speedily.  However, many older children are waiting in Ukraine, Bulgaria, China, and many other countries, in conditions just as deplorable as Pleven. U.S. foster care provides for over 100,000 children each year, most of whom have no disability except their age, in conditions which are incomparably better.  These children go to school, receive full medical care, and enjoy a semblance of family life.  Yet emotionally, they need parents who will baby them, make up the lost time, and allow them to reach their true potential.

Why, then, do they wait?  These gifts, these babies frozen in time?  A newborn baby is no less a bundle of needs than a child scarred by loss and neglect.

One of the prayers of Yom Kippur calls upon us to see ourselves as raw material in G*d's hands, to be fashioned into a work of art through the process of repentance and good deeds.  Khalil Gibran once again echoes Jewish liturgy when he writes:

You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as he loves the arrow that flies, so He loves also the bow that is stable.

Older children - Special Needs edition

Yesterday I wrote about the risk of adopting an older child, not in term of the difficulties of adjusting once they come home, but even before that, when they resist leaving their familiar surroundings and take a chance on the better life being offered to them. 

Today I will write about adopting a child who is about to age out, but is not mentally competent to voice an opinion on the matter of his/her adoption.  These children would be committed to a mental institution to live out their days if they are not adopted by their 16th birthday.

Jenny and Steven Brown are in the final stages of adopting 16-year-old Sophia, who has Down syndrome and is extremely delayed.  She is the size of a pre-schooler, and does not walk independently.




Adeye and Anthony Salem are adopting 15-year-old "Faith", whom they will call Hasya.  Adeye is visiting Hasya at Pleven right now. Hasya, who has Down syndrome as well, has been restricted to a crib her whole life, is grossly malnourished, the size of an infant or small toddler.  In the last few months, additional care and donated nutrition have improved her condition.  There is still so much more to go, though.



And Susanna and Joe Musser are taking a leap of faith for the second time, to adopt 15-year-old "Tommy".  Like Hasya, he has lived in a crib his whole life.  He does not have Down syndrome, but has other disabilities, and is the size of a small 3-year-old.  They did not think they would qualify financially for another adoption at this time, but apparently they can, and their home-study social worker is expediting their process!  Susanna was desperately seeking a family for "Tommy", and is so excited to be able to be that family.



If born in the USA, these three could have been in High School together.  I could see Sophia as a bubbly cheerleader, Hasya as an artsy type, and Tommy as a video-game-playing drummer in the school band.  Instead, they are likely to never graduate kindergarten.  After adoption, they will need intensive medical and nutritional care, and long-term physical and speech therapy just to become minimally functional. And then what?

Three children.  Totally uncharted territory.  How far can a severely disabled, pint-sized adolescent catch up in a loving home?  We really don't know!   Those of us considering or in process of a special-needs adoption can only look on and marvel at the incredible stand that these families are taking for these children.  All three families are deeply religious.  Is it possible to take something like this on without faith in a higher power?  All three families profess utter inadequacy to deal with the challenges that they are taking on, and their complete reliance on G*d to see them through.

Where would an Atheist get that strength from?