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?

Blogs I follow

There are a few blogs that I follow especially closely.  I have read their stories back to the beginning of the blog, and have been following them for the past year and a half in real time.

First is the Musser family.  Until their tenth child was born with Trisomy 21, they were just a large, rural, Christian family living in Amish country in Pennsylvania. Little Verity introduced her mom to the Down syndrome community, and opened her eyes to the plight of children with disabilities in foreign orphanages and institutions. While still learning the ropes of taking care of a special needs baby, they committed to adopting a little girl with T21 in Bulgaria. This child, whom they would name Katie, turned out to suffer from much more than a chromosomal variation.  Warehoused in a substandard orphanage, she was literally starved, weighing less than 10 lbs. when they brought her home at almost 10 years of age.  While they nurtured her and healed her from the years of neglect, the Mussers realized that many other children in the same institution are similarly suffering.  Susanna Musser singlehandedly publicized the Pleven orphanage, inspiring dozens of families to adopt children with various disabilities from there, as well as bringing about structural changes in the orphanage itself.  They recently adopted one more child from there themselves, a boy with Cerebral Palsy who was about to age out of the international adoption program.  Susanna writes beautifully and passionately, not shying away from showing the tough side of special needs adoption, while also clearly portraying the beauty in it. She is highly motivated by her Christian faith, and refers to it often, but communicates her own experience independently of the New Testament quotes. She also includes many beautiful photographs of her lovely children.

Then there is the Alan family.  Renee has professional background as a therapist, and she and her husband have fostered many children with and without disabilities before embarking on an adoption. They adopted a 5-year-old girl with severe Cerebral Palsy in early 2012.  Unlike Susanna, Renee found her child's institution to be surprisingly good.  The children appeared to be well taken care of, and well adjusted as a result. It was clear that they desperately needed families, though, as no opportunities awaited them once they would grow up. Like Susanna, she advocated tirelessly for the children she had met, until the vast majority of those eligible for adoption have been adopted.  She writes in a more rambling, Hemingway-esque style, offering minute details and weaving multiple thoughts into each blog post.  She also punctuates her writing with New Testament quotes, but the value of her writing is in the realistic picture she paints of the experience of special needs adoption.  More recently she returned to Ukraine to adopt 3 more children with special needs, and has been writing extensively about FAS, CP, and other issues.

Finally, there is the Spring family. Their youngest child (from Leah's first marriage) has Trisomy 21. They were not expecting to conceive any more children, but after Leah traveled to Eastern Europe with her friend Shelley Bedford to assist with her adoption, they realized that adopting another child with T21 was the right choice for them. They have since adopted 3 boys from Serbia, all with T21. Like Susanna and Renee, Leah has been advocating for adoption of children from similar circumstances, in her case, Serbian orphans. Leah's writing is mostly conversational, offering a very comfortable perspective into her daily life.  While she is also Christian, religion does not play a major role on her blog, which is refreshing!

There are many other stories I follow -- just look on the right side-bar!  But these are the most consistently informative reads on this subject.

Shana Tova!

Last night at services, our rabbi made a really cool sermon on the "kingship" of G*d.  He pointed out that the Hebrew word for "king" - "melekh" - comes from the same root as "to walk" - "lalekhet".  Thus, the image is not that of a king sitting staidly on His throne, but rather the dynamic force permeating the Universe.

I thought about this, and then I thought about the preamble (hmm, "amble" = "walk"...) to most Jewish blessings:

"Barukh Ata Adonai Elokeinu Melekh Ha-Olam....."
Blessed are You YHWH our G*d King of the Universe...."

I usually put a mental comma after "Adonai", so that the second phrase is simply an expansion on Who G*d Is, but now I put in 2 commas, and also read "King" as "Dynamic Force":

"Barukh Ata, Adonai Elokeinu, Melekh Ha-Olam....."
Blessed are You, YHWH our G*d, Dynamic Force of the Universe...."

What's with "YHWH", by the way, you might be asking.  That is the unpronounceable Name of G*d, as it would appear (with the equivalent Hebrew letters Yud Heh Vav Heh) throughout the Torah.  Back in the days of the Temple, this name would be pronounced only once a year, on Yom Kippur (this year coming next Wednesday!) by the High Priest.  These days people substitute a variety of different names (such as "Adonai" = "My Lord") in its place.  But what that name actually IS, is the root of the verb "to be".  When we call G*d YHWH, we are referring to the Was/Is/Shall Be nature of the Universe.

So when we call G*d YHWH -- a constant Being -- we refer to Him as "our G*d", but when we call Him Melekh -- a dynamic Force -- it pertains to the Universe as a whole.   We have a free will -- we are dynamic -- so our relationship to G*d is as to an anchor ("Rock of ages").  The Universe does not -- so much is random! -- so there we need a reminder that G*d is there even in the randomness.

Another observation: The phrase "Adonai Elokeinu" is cast in the plural, even though G*d is definitely One in the Jewish tradition!  This seems to say to me that each of us has an individual, separate relationship with G*d.

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This morning, I saw Susanna Musser's latest update about Katie, the 10-year-old who was adopted last year from one of the worst institutions in Eastern Europe.  When she came home 10 months ago, she weighed just over 10 lbs., developmentally like a newborn but even weaker and with serious barriers to attachment.

 

Now, less than a year later, she is the size of a 4-year-old, learning to communicate both with sign language and speech, learning to crawl and walk with a walker, and so much more!   In her update, however, Susanna emphasizes that there is no persistent anger or grief about the effects of the years of neglect on this child:

Perhaps it was because we were very prepared for Katie as she was.  We really did fully accept the Katie Before as the child we would love and care for until she reached the end of her life.  We understood that she might not grow, gain any skills, or love us back.  There was so much joy in simply being allowed to have her as our daughter.

By being completely accepting of Katie as she was (static Being), the Musser family was able to take the actions needed to meet her needs.  However, in watching her progress and flourish,

Her care may be time-consuming, but she herself, the person who is Katie, only adds to our joy in life.
Katie’s progress is a source of celebration.  She keeps progressing, so we get to keep celebrating!

So here we see the pure joy of the Dynamic Force -- whatever progress is made, is cause for rejoicing.




Or, in other words,
"G*d grant me serenity to accept the things I cannot change, the strength to change the things I can, and the wisdom to know the difference".

TREATED Hydrocephalus

Remember when I was agonizing about children who, in this day and age, are left to die with untreated hydrocephalus?

I am so happy that 2 children with hydrocephalus from Pleven have families committed to them, and have received a shunt to relieve the pressure until their new mommies and daddies come for them.

Marsha's mommy (also adopting Gabby from Pleven) spends all her blogging time advocating for other children.



and Adam




I also want to highlight the story of Micah Evensen, who has been home for barely half a year.  His hydrocephalus had ravaged his brain, to the point that he had very little brain tissue left in a skull filled with fluid.  Nonetheless, he is now learning to feed himself, as well as to communicate, sit up, scribble on paper, crawl, and even walk!  When he came home, he could barely lift his oversized head, and avoided most kinds of stimulation.  Just look at him now!



I can't wait to see how Marsha and Adam blossom when they come home!

Another Pleven child

Brandi of Pleven is now available for adoption:



Brandi is 6 years old and has Cerebral Palsy, besides the extreme physical and developmental delays we have seen in the other Pleven children.

Pleven Update *MORE ADDED*

Children already rescued from Pleven:

Katie Musser
Lina Carpenter
Amelia, Sophia and Jeremy Brown
Keith Unroe
Samantha Knuth
Victory Groenendyk
Ana Kenyon


Families are coming for:
"Ian" Menges
"Kolina" Duncan
"Carissa" Matthews
"Faith" Salem
"Gabby" and "Marsha" Rosencrants
"Adam"
"Makayla" Booth
"Mickey" and "Shawn" Beck
"Gemma" Brown
"Alyssa" and "Beacan" Robbins
"Sarah" Roodhuyzen
"Teddy", "Val", and "Stewart" Archer
"Sam" Heaston
"Mario" Harris
Lana McCarty
Bianca Moss



Still waiting:
"Penny" and "Peyton"
"Garnet"
"Chad"
"Kramer"
"Presley"
"Carson"
"Gage"
"Theodore"
"Thad"
"Harvey"
"Brandi"

Marsha has a family!

Remember Marsha?

A family has committed to her!  The Bulgarian hospital that has been taking care of the children of the Pleven orphanage has determined that giving Marsha the life-saving shunt she needs is beyond their expertise.  Apparently there are going to be complications involved.  Fortunately, here in the U.S. her new family will be able to bring her to a state-of-the-art hospital where she will finally be treated!  I am so glad!  I just adore her sweet little face and I can't wait to see her smile once she is loved and nurtured as she deserves.

Unfortunately, she is not the only child at Pleven with untreated hydrocephalus.  Here is Adam:

Adam is already 5 years old.  About a year older than Marsha.

So very tiny, and suffering so much with his swollen head.  He also needs cataract surgery, nutrition, and LOVE!  His time is running out, but can you see what a handsome fellow he can be if given an opportunity to heal and blossom?

For more information about Adam and how you can help him, email Nina Thompson at nina.t@chiadopt.com.

Tommy and Marsha

Please keep these 2 children in your prayers -- they both need families YESTERDAY!

Tommy is 15 years old.  He has less than a year before his fate will be sealed forever. He is so tiny! Find out more on Susanna's blog.

 


And here is Marsha, from Pleven:




What a sweetie she is! She is in urgent need of a shunt for her hydrocephalus.  Already about 4 years old, and how her head must hurt! The longer she waits, the greater the chance that she will die before help can reach her.

Marsha

Last week I blogged about what happens when hydrocephalus goes untreated. And today, a sweet 4-year-old girl from Pleven with hydrocephalus was listed.

This is Marsha:


The children I blogged about last week were 5 and 6 years old. Quick intervention could mean the difference of life and death for Marsha.