Special needs adoption from a Jewish perspective.

Special needs adoption from a Jewish perspective.

Saturday, December 29, 2012

Torah Connection - Va-yechi

By a confluence of the common calendar and the Jewish calendar, the final chapter we read in 2012 is also the final chapter of the book of Genesis.  This is the transition from Israel the large family/clan to Israel the People.  The story is told, however, through two deaths: the death of Jacob, and the death of Joseph.

Jacob does not seem to have changed much since his youth.  He still plays favorites with his sons and grandsons, although he does seem to discriminate between them based on character traits rather than subjective affinity.  With respect to his grandsons Ephraim and Menashe, he continues the tradition of favoring the younger over the elder: Kane vs. Abel, Ishmael vs. Isaac, Esau vs. Jacob, Rachel vs. Leah, Joseph vs. his brothers.  He also repeats this in the blessings to his own children: Judah is favored over Leah's other sons, and Zebulun is favored over Issachar.  This is a theme that has dominated Jacob's entire life, and it persists right to the end.

Joseph, on the other hand, has learned true humility and generosity.  After the death of their father, the other brothers fear that Joseph may take vengeance upon them. Instead, he responds,

'Don't be afraid,' said Joseph to them. 'Shall I then take God's place?
Vayomer alehem Yosef al-tira'u ki hatachat Elohim ani.

You might have meant to do me harm [but] God made it come out good. [He made] it come out as it actually did, where the life of a great nation has been preserved.
Ve'atem chashavtem alay ra'ah Elohim chashavah letovah lema'an asoh kayom hazeh lehachayot am-rav.

Now don't worry. I will fully provide for you and your children.' He thus comforted them and tried to make up.
Ve'atah al-tira'u anochi achalkel etchem ve'et-tapchem vayenachem otam vayedaber al-libam.

Jacob and Joseph both express their dying wish to be buried in the land of their forefathers.  Joseph fulfills his father's wish promptly, mourning him with "a very great and solemn lamentation".  Jacob is embalmed and mourned in Egypt for 70 days before being taken with great ceremony to the Cave of the Patriarchs in Hebron.

Joseph, on the other hand, receives no such treatment.  Instead, "...and he was embalmed and placed in a coffin in Egypt." Thus he was left until his descendants carry his remains back to Israel during the Exodus.


I am thinking of Joseph's words with respect to the recent Russian ban on American adoptions. It seems like a bad thing, but it can also be seen in the context of Russian reforms of its own child welfare system.   At the same time, a proposed amendment to the ban may allow an exception for children with special needs, so that these may get more attention from potential adopters.   Finally, this may create the pressure on adoption agencies and facilitators to address corruption and poor oversight, so that future adoptions are less likely to disrupt or result in child abuse/neglect (as can happen when parents are poorly prepared).

Praying for Ivan and Celine.

Praying for Wyatt.

Praying for Nathan.

And all the ones we know about and don't know about, who wait to be "fully provided for".


Tuesday, December 25, 2012

Are you home-study ready?

Here are 2 children who should get a family quickly.  They each have a huge grant for their adoption, so the financial burden on prospective parents is minimized.  They are high-functioning and mostly healthy except for their Down syndrome.  And they are in Russia, which means that if the adoption ban is signed into law they would have to be adopted quickly, before the gates shut tight.

Here is Ivan:
Ivan is almost 6 years old.  He is probably still at the baby house, but not for long.  His profile photo is not smiley - is that why he keeps getting passed over?  He does look like a cuddle bug!  He needs to see a cardiologist for his heart condition, but so far it is not really holding him back.  He has some very motivated people fundraising for him, and his grant is over $18K.  In addition, his placement agency offers a $10K grant to help qualifying families with his adoption.  Since adoptions in his region cost around $30K, that means that if your home-study is already paid for, everything else is covered!  Somebody needs to move fast and bring Ivan home!

And this is Celine:
Again, an un-smiley picture.  But look at those cheeks!  Celine just turned 7, and will be transferred to an institution very soon.  Her current orphanage is very good, but she needs a family!  She is healthy, sociable and affectionate.  Her grant is almost at $30K, but she is located in the St. Petersburg region, where the costs are somewhat higher than in Ivan's region.  Still, if your home-study is done, there is not much more left to pay, so you can focus on the paperwork without worrying about fundraising.  This region is also more finicky about the adoptive families, so you need to make sure that you qualify.

Mommy? Daddy? Where are you?

Torah Connection - Va-yigash

Last week was our 8th anniversary, which means that this chapter was the same one read the day before our wedding.   It was a great chapter for a wedding!  It is about the re-unification of Joseph and his brothers, the joining and reconciliation of the various branches of the family.  Joseph and his father Jacob are both shocked and overjoyed that the other is alive.

Of course, there is a cloud inside this silver lining:  Under the pretext of taking care of his extended family, Joseph brings the entire clan to Egypt, setting in motion the events that will lead to their enslavement.  Looking full circle, this enslavement will be the crucible that will forge the "extended family" into a people destined to become a "light onto the nations" for several millenia.

So which is it?  Is the enslavement a negative, unintended consequence of Joseph's good intentions, or is it a necessary but unpleasant preparation for the fulfillment of Israel's destiny?  Or both?  In modern terms, the Shoah (Holocaust) was in part exacerbated by the fact that European Jews were so well integrated into their communities that they could not believe the evil that was about to be perpetrated upon them, and too few sought to escape before it was too late. However, it was out of the ashes of the Shoah that motivated both Jewish groups and Western governments to support the establishment of the State of Israel, the fulfillment of 2000 years of Jewish prayers.

Saturday, December 22, 2012

Russian adoption ban

The lower house of the Russian Duma (parliament) has just passed a ban on adoptions by Americans by a huge margin.   It will now be up for vote in the upper house, and then a signature from President Putin.  According to pre-existing treaties between the 2 countries, such a ban could not go into effect for one year after passage, but even so, it would spell doom for the thousands of children who would remain in orphanages and institutions instead of finding loving families.

As reported here, 70% of all adoptions in Russia are domestic (i.e. by Russian families).  However, most (but not all) of these are of healthier, younger children.  Older children, as well as children with disabilities or chronic illnesses, if they are adopted at all, are generally adopted internationally, by American or European families.

One issue is that there have been various documented cases of abuse and/or neglect of these adopted children, including 19 well-publicized deaths in the past 10 years.  However, to put this number into perspective, over 1000 domestically-adopted Russian children have died in a similar time frame.

Here are some of my previous posts about Russian orphans.  These kids are desperately in need of families to love them and give them the medical and educational opportunities that will enable them to live full lives.

Please sign this online petition to appeal to Putin to VETO this ban, so that these children can find families!

Friday, December 21, 2012

Torah Connection - Miketz

This is in many ways simply the 2nd half of the previous chapter.  Now Pharaoh has his famous dreams (skinny wheat eating the fat wheat, skinny cows eating the fat cows), Joseph is brought out from captivity and elevated to supreme advisor to the Pharaoh, and finally his brothers come to Egypt in search of grain, fulfilling his childhood prophetic dreams by bowing down to him.

I am still in catch-up mode.

Pharaoh's dreams sound too much like the fiscal cliff.

Shabbat Shalom!

Torah Connection - Va-yeshev

I actually chanted a portion of this parsha in synagogue, um, 2 weeks ago.  This parsha contains 2 major themes, each of which is repeated once in Jacob's family, and once in Pharaoh's household. 

The first theme is dreams and their interpretations.  These stories are quite well known.  First Joseph brags about his dreams of dominating his brothers, which leads them to get rid of him by selling him to Egyptian slavery.  There he descends even lower as he is wrongly incarcerated and plants the seeds of his own redemption by interpreting the dreams of his fellow prisoners.

The second theme is frequently glossed over by grade-school bible classes.  It is the theme of sexual impropriety.  First Judah's daughter-in-law Tamar (after the early demise of her husband and then his brother) seduces him in order to conceive a child to continue the line.  She does this in the guise of a prostitute.  When her pregnancy shows, he denounces her for her "harlotry".  She then produces his staff and seal as proof that the child is his. 

Later, Pharaoh's wife attempts to seduce Joseph.  He resists her advances, and she retaliates by falsely accusing him of attempted rape (sounds eerily modern!), for which he is incarcerated -- tying up the two themes!

I am a bit low on imagination right now.  This is just the Freud chapter of the bible.  Dream interpretation and sex. Feh.

Sunday, December 16, 2012

Torah Connection - Va-yishlah

Eeek, I am so behind in the Torah Connection!

Well, a couple of weeks ago was Parshat Va-yishlah.  Jacob is returning from his uncle Laban's house with his wives, children, and great property back to the land of Canaan, his childhood home.  Two separate encounters are described in this section.  One is the reunification with his brother Esau.  The brother who sold his birthright for a pot of lentil stew, and then threatened to kill him when Jacob received their father's blessing in his stead.  In anticipation of this encounter he prays to G*d, and sends lavish gifts to Esau.

The other encounter is more cryptic:

25 Jacob was left alone. And a man wrestled with him until the break of dawn. 26 When he saw that he had not prevailed against him, he wrenched Jacob's hip at its socket, so that the socket of his hip was strained as he wrestled with him. 27 Then he said, "Let me go, for dawn is breaking." But he answered, "I will not let you go, unless you bless me." 28 Said the other, "What is your name?" He replied, "Jacob." 29 Said he, "Your name shall no longer be Jacob, but Israel, for you have striven with beings divine and human, and have prevailed."

 Jacob was alone, yet "a man" wrestled with him all night.  Who is this man?  A traditional reading answers that this was an angel of G*d, a "divine being", sent to test him, and to bless him when Jacob passes the test.  Other readings say that he was simply alone, and wrestled with himself.  This was the struggle with himself as Jacob, defined by his relationship with his brother ("the Supplanter") redefines himself through his relationship with G*d ("Struggles with G*d").  This is his coming-of-age, as he puts his childhood finally behind him and becomes a man worthy of leading a new nation.

There is another possibility, which is that this man was none other than Esau.  Perhaps they did in fact wrestle mano-a-mano.  This was not a confrontation to be decided by proxy, but by the very individuals involved.  Through the pain of this struggle, both men came out with a different understanding of each other.  They now not only see each other's humanity, but each other's divine spark, as well.  Notice,

Your name will no longer be said to be Jacob, but Israel (Yisra'el). You have become great (sar) before God and man. You have won.'
Vayomer lo Ya'akov ye'amer od shimcha ki im-Yisra'el ki-sarita im-Elohim ve'im anashim vatuchal.

Jacob returned the question. 'If you would,' he said, 'tell me what your name is.' 'Why do you ask my name?' replied [the stranger]. He then blessed [Jacob].
Vayish'al Ya'akov vayomer hagida-na shmecha vayomer lamah zeh tish'al lishmi vayevarech oto sham.

Jacob named the place Divine Face (Peniel). [He said,] 'I have seen the Divine face to face, and my soul has withstood it.'
Vayikra Ya'akov shem hamakom Peni'el ki-ra'iti Elohim panim el-panim vatinatsel nafshi.

and later, in his daytime encounter with Esau,

'I have plenty, my brother,' said Esau. 'Let what is yours remain yours.'
Vayomer Esav yesh-li rav achi yehi lecha asher-lach.

'Please! No!' said Jacob. 'If I have gained favor with you, please accept this gift from me. After all, seeing your face is like seeing the face of the Divine, you have received me so favorably.
Vayomer Ya'akov al-na im-na matsati chen be'eyneycha velakachta minchati miyadi ki al-ken ra'iti faneycha kir'ot peney Elohim vatirtseni.

Jacob here openly acknowledges that seeing Esau is "like seeing the face of the Divine" -- "Pnei Elohim".

Is this not instructive for us today, as we agonize over the violence in our world, whether individual acts like the kindergarten massacre in CT,  or wars and state-sanctioned violence around the world?  We can transform the violent impulse when we see the other as both human and divine: "ki-sarita im-Elohim ve'im anashim vatuchal."

Saturday, December 15, 2012

Children and pets

We have recently acquired 2 new members of our household: a 14-month-old Lab Mix, and a 2-month-old kitten. It occurred to me that this would give all members of the family a chance to learn about the joys and difficulties of integrating an adopted individual into a home.   The dog, especially, is analogous to an older-child adoption, as she was found as a stray in Tennessee and has some baggage from her early experiences.  She is eager to please, but very nervous around other dogs, and territorial in her relations with the kitten.  They are still kept separate in our house:  The kitten is in the main bathroom, and we occasionally open the door to the gated-off hallway next to it.  The dog accepts his presence in the bathroom, but if the kitten steps into the hallway, she barks at him until he retreats to the bathroom.  We will be hiring a professional dog trainer to help us with these issues (therapy!).  

Other than more logistics about going places, though, this has been pretty easy!  The dog had trouble sleeping through the night at first, since she is not used to city noises, but is doing much better now.  I am getting used to getting up at a consistent hour with her, feeding her, and then taking her out for a brisk walk or jog.  Exercise!  She is learning (gradually but quickly at the same time) how to heel and walk calmly in spite of distractions.   The kids are learning (finally!) to keep their toys etc. off the floor, and are actually showing some signs of increased helpfulness!  And it's only been a week!

It's a Hanukah miracle!

Monday, December 3, 2012

A "Helen Keller" story

One of the stories I have been following this past year has been the Spring family.  They have 2 adopted boys with Down syndrome, now aged 8 and 12, both from Serbia, as well as a 16-year-old bio daughter with Ds, and several adult children.  The 8-year-old, Asher, came home less than a year ago, developmentally a baby in most areas.  Specifically, he was completely non-verbal, not communicative in any way, as well as exhibiting severe institutional autism.

Here is an update from this week, describing his "Helen Keller" moment -- when he realized that he can communicate, either using words or signs, in order to have his needs and wants met!

This brought tears to my eyes.  Enjoy!

Saturday, December 1, 2012


Not much blogging in November.  We are actually adopting..... a rescue dog!   I think this will actually prove an important step in helping the whole family deal with the kinds of issues that are likely to come up in a real adoption, but on a much smaller scale.  And she is wonderfully adorable!

Some really good news:

Garreth has a family coming for him!

Sasha has a family coming for him!  After all these years!  I am so excited to follow his story home!

And some bad news:

Alexei has been transferred to that same "Lost Boys" institution.  He is a nine and a half years old toddler.  In the baby house, his eyes sparkled mischievously, and he had some serious spunk.

How long will his spirit hold out in a life of sitting in an empty shed with a pack of mistreated, neglected boys and youths who spend their days rocking and grunting?

And a sad story that I didn't know about until it was over.

Saturday, November 24, 2012

Torah Connection - Vayetzei

This week's parsha opens with Jacob running away from his brother's wrath after the debacle with Isaac's blessing.  He is on his way to his uncle Laban's house, far away, with no clue about what he might encounter.  He sleeps with a hard stone for a pillow.   How far he has fallen from being his momma's spoiled little boy!  He had always lived a sheltered life, unlike his brother Esau who risked his very life every day at the hunt. Here he is, exposed to the elements, uncomfortable, tired, hungry, and alone.  And what happens then?


Genesis 28:12-15

He had a vision in a dream. A ladder was standing on the ground, and its top reached up toward heaven. G*d's angels were going up and down on it.
Vayachalom vehineh sulam mutsav artsah verosho magia hashamaymah vehineh mal'achey Elohim olim veyoredim bo.

Suddenly he saw G*d standing over him. [G*d] said, 'I am G*d, Lord of Abraham your father, and Lord of Isaac. I will give to you and your descendants the land upon which you are lying.
Vehineh Adonay nitsav alav vayomar ani Adonay Elohey Avraham avicha ve'Elohey Yitschak ha'arets asher atah shochev aleyha lecha etnenah ulezar'echa.

Your descendants will be like the dust of the earth. You shall spread out to the west, to the east, to the north, and to the south. All the families on earth will be blessed through you and your descendants.
Vehayah zar'acha ka'afar ha'arets ufaratsta yamah vakedmah vetsafonah vanegbah venivrechu vecha kol-mishpechot ha'adamah uvezar'echa.

 I am with you. I will protect you wherever you go and bring you back to this soil. I will not turn aside from you until I have fully kept this promise to you.'
Vehineh anochi imach ushmarticha bechol asher-telech vahashivoticha el-ha'adamah hazot ki lo e'ezovcha ad asher im-asiti et asher-dibarti lach.

 From the pit of despair, G*d  reaches to him in a dream and promises to be with him through whatever the future brings.  Note that He is not promising an easy life.  What is being promised?

1. The land of Israel.  Yes, the same one that has been fought over for the last three millenia, up to this very day.  My aunts, uncles and cousins in Israel are under attack by enemies that have sworn to exterminate them. The promise of that land is a central precept in Judaism, which has sustained generations of Jews in exile.  When the People of Israel were hungry, tired, and alone among the gentiles; when they were oppressed and hunted down by those whom they had considered "brothers"; this was the promise that held them together and gave them dignity as a people.
2. Many descendants!  Once again, children are the greatest and most important blessing.  Without children, of course, there can be no continuity of a people.
3. Then again, this blessing is double-edged.  "Your descendants will be like the dust of the earth."  Numerous, yes, but despised.  "You shall spread out to the west, to the east, to the north, and to the south." In spite of the promise of the land of Israel, the people will be exiled throughout the earth. "All the families on earth will be blessed through you and your descendants."  So the rest of the world will be blessed through the Jews.  Jews are at the forefront of social, technological, and economic advances that many millions of gentiles benefit from.  There is no promise, however, about these blessings being appreciated or repaid.


And how does Jacob respond?

Jacob awoke from his sleep. 'God is truly in this place,' he said, 'but I did not know it.' Vayikats Ya'akov mishnato vayomer achen yesh Adonay bamakom hazeh ve'anochi lo yadati.

 He was frightened. 'How awe-inspiring this place is!' he exclaimed. 'It must be God's temple. It is the gate to heaven!'
Vayira vayomar mah-nora hamakom hazeh eyn zeh ki im-beyt Elohim vezeh sha'ar hashamayim.

1.  He awoke from his sleep:  He became aware of his life in a new context
2.  He recognized G*d's hand in his life, and acknowledged his previous ignorance.
3.  He was frightened!  Having direct contact with the divine is a huge mantle of responsibility.   As the Psalmist says, "Once your eyes have been opened, you can't pretend that you don't know."  This is very scary!  Remember again that this is the sheltered momma's boy, out on the run from his estranged brother. He is so not prepared to be a leader of a nation!
4.  He nonetheless recognizes that it is this challenge which is the gateway to heaven.  Through the challenges that G*d gives us, we become the people we are meant to be.

Monday, November 19, 2012


Bulgaria often releases the files of some children with special needs for a month or two, during which time they are available through adoption agencies.  At that point, if no families have committed to them, their files are returned, and they must be specifically requested in order to be adopted.

Garreth is one of these children.  He has both Down syndrome and hydrocephalus.   He has had surgery for the hydrocephalus, but will certainly need that to be followed up on as he grows.  He is 3.5 years old:

His file says:
When an adult appears, Garreth looks at them and maintains eye contact for several seconds. He smiles when jested. He stands when put in a walker. He holds his head upright stably. He remains seated when provided with a stable support. He grabs and plays with toys when they are placed close to him so that he does not have to put much effort in reaching them. His speech activity is at a stage of producing sound combinations and sometimes syllables.

Can you see yourself loving this adorable boy and helping him reach his potential?

Sunday, November 18, 2012

Torah Connection - Toldot

And now catching up on this past week's reading, we have Toldot, which is a very troubling passage.  Jacob is not seen here as a very sympathetic character.  He extorts the birthright from his brother Esau, and then resorts to trickery (aided by his mother) to seal that extortion with a blessing from his aging father.  What are we to learn from this?  Does the end in fact justify the means?  Doesn't this feed right into the worst anti-Semitic stereotypes about the greedy, cunning Jew? 

I think Jacob is not the focus of this story, any more than Isaac is in the story of his binding.  Jacob and Esau are pawns of their parents in this episode, just as Isaac was Abraham's pawn.  Isaac and Rebekah are seen as much smaller figures than in the previous chapter.  Picking favorites among their children, they are not exactly paragons of good parenting!  It is this parental failure which sets the brothers against each other in the first place.  The conflict escalates until Jacob in fact gains his father's blessing.  Immediately after, Esau comes in to claim the blessing for himself.  Isaac sees his mistake, and offers Esau a blessing as well.  In a sense, the entire passage can be seen to climax in Isaac's dual blessings.  We must not give to one child at the expense of another, but find a way to bless each of our children as our favorites, giving the best to each, so that the love will multiply rather than divide.

This is a question often grappled with when parents consider having additional children, whether biologically or by adoption.  Will a new child, while undoubtedly a blessing, take blessings away from the older sibling(s)?  Will the birthright be "extorted" by the new interloper?  Especially when talking about special needs adoption, the stakes are high.  The blessing to a child rescued from substandard institution is great, but what will be the cost to the children at home?  We, like Isaac, must find a way to bless them through the new addition.  This will not happen automatically.  We must anticipate their rivalry and transform it into a healthy, loving and mutually beneficial sibling relationship.

Torah Connection - Chayei Sarah

Quick catching up on the Torah Connection.

Last week's reading was Chayei Sarah, which is an account of Abraham's life after his wife Sarah dies after the near-sacrifice of Isaac.   It is often understood that it was Abraham's willingness to kill their son that caused Sarah to lose her will to live. 

And what does Abraham do at this point?  Well, coming face to face with mortality in his immediate family, he realizes that he must provide for the next generation, and seeks a wife for Isaac. Rebekah distinguishes herself by not only offering Eliezer water, but taking the extra effort to draw as much water as necessary to take care of his camels.  It is this going beyond the basic requirements that makes her worthy of her role in Jewish history.  I was impressed to see this message right after speaking to my own children about the need to learn to take initiative to help out before being asked.  Timely Torah!

24:18 'Drink, Sir,' she replied. She quickly lowered her jug to her hand and gave him a drink.
Vatomer sheteh adoni vatemaher vatored kadah al-yadah vatashkehu.
24:19 When he had finished drinking, she said, 'Let me draw water for your camels, so they can [also] drink their fill.'
Vatechal lehashkoto vatomer gam ligmaleycha esh'av ad im-kilu lishtot.

It is also the message we need to hear when faced with human needs.  Whether it is victims of a hurricane or of unenlightened social systems, we must fight our natural tendency to let someone else deal with it.  Let us, like Rebekah, draw water for the stranger's camels, until they have drunk their fill.

I'm back!

I've been a bit out of the loop for some reason the last 2 weeks.  Just kinda preoccupied with stuff on the home front, and worrying about victims of Sandy, and rocket attacks in Israel, and so on.

The long-awaited meeting at my congregation arrived today, when we were supposed to outline an agenda for this year, and I hoped to get special needs children on the agenda.  Didn't happen. The meeting got a huge infection of committee-itis. Lots of talk about how we really should have lots of conversations about the stuff that's important to us instead of.... having those conversations.  But the food was good. 

Tuesday, November 6, 2012

Torah Connection - Vayera

This past week my congregation participated in Global Hunger Shabat, joining congregations around the world to raise awareness about those who do not enjoy the abundance that we take for granted.

Part of the reading for this event is taken from this week's Torah portion, where Abraham argues with G*d on behalf of the people of Sodom and Gomorrah.  How much "collateral damage" is acceptable when destroying these bastions of evil? Not 50, or 40, or 30, or 20, or even 10 innocents must perish together with the guilty.

What can we learn from this?  First, that a small number of people can, in fact make a difference.  A small group of people banding together for justice against an unjust society can sway the course of events, whether we consider that to be a divine intervention or not.   Today, as we vote, we can think of those as the swing voters who ultimately determine the outcome of the election.

Second, that a small impact is worth making!  When we look at all the troubles in the world, whether it be global hunger, or institutionalized orphans, or oppressed people of all sorts, we can be overwhelmed.  If we cannot make a significant impact, why tilt at windmills?  This passage says, no, it is important to advocate even on behalf of a small number.  Saving even a single soul is like saving the whole world.

Finally, there is a subtle point that I noticed while reading this passage during our study session.  Abraham asks G*d for justice: "Far be it from You to do such a thing, to bring death upon the innocent as well as the guilty, so that innocent and guilty fare alike. Far be it from You! Shall not the Judge of all the earth deal justly?"  G*d, however, responds to Abraham's plea with mercy:  "If I find within the city of Sodom ... innocent ones, I will forgive the whole place for their sake."  Abraham's request for justice is in fact denied -- the innocent and guilty will ultimately fare alike in this case.  Here is the tension between the "conservative" and "liberal" points of view.  Both seek to create a better world, but some seek to achieve it through justice, while others through mercy.  Judaism has a longstanding tradition of not choosing between them, but instead grappling with that very tension.  It is useful to remember, as we argue with each other over the political issues of the day, that our political adversaries are not evil incarnate, but just people with different opinions.



Why do children with disabilities do so much better when they come here?  For the same reason that adults and children, with and without disabilities, of all races and creeds, do well here.  This is a free country, where our basic rights are protected, and where the government belongs to us, not the other way around. 

Unless we let it become the other way around. 


Monday, November 5, 2012

Down Syndrome WON'T ruin your life!

My sweet husband sent me this link today.  Enjoy the bonus cute baby pics, and check out the discussion in the comments, too!

Sunday, November 4, 2012

Orphan Sunday

I didn't realize it was "Orphan Sunday" until I saw some other bloggers post about it.   I can't think of anything new to say about it right now, but I have a tag for it.

Wednesday, October 31, 2012

31 for 21: It's Halloween, which means...

.....that 31 for 21 is almost over!  I have several posts in my head, but haven't gotten them down, what with running after 4 kids and a hurricane (but I repeat myself...)

31 for 21: Make a difference NOW!

Do you know that most OB/GYN's - who are tasked with advising pregnant women whose baby is diagnosed with Down syndrome about their options - know no more about the condition than how to diagnose it?  Dr. Julia Kinder has set out to change this! She has started an online petition asking that third year medical school students receive, at minimum, two hours of education and training related to Down syndrome.  Can you believe that this minimal amount is 2 hours more than most of them currently receive?  That means that, in spite of the huge strides in medical and educational progress that has been made in this field, these doctors are basing their advice on their experience with "those kids" back in grade school.

Please make a difference in the way new doctors see individuals with Down syndrome by signing here.

Hat Tip Leah S.

Thank you!

Monday, October 29, 2012

31 for 21: The Ugly Duckling, another twist

The great thing about classics is that people can relate to them from many different circumstances.  They truly are universal.  Just a few days after I connected The Ugly Duckling to Down syndrome, my friend Hevel Cohen pointed to this post, where a Christian gay man quoted the entire original story by Hans Christian Andersen (who apparently was also gay), to show how it is actually about a homosexual individual seeking love and acceptance.

It is interesting, that so many people who use their religion to reach out to orphans, and to children with disabilities, are unable to see homosexuality in the same way.  Isn't a "sexual difference" just as much a "special need" worth respecting?

Saturday, October 27, 2012

31 for 21: Torah Connection - Lech Lecha

Last week's reading was G*d's covenant with Noach, and through him, to all humanity, to continue the human race in perpetuity. This week continues the theme of G*d's covenantal relationship with people, but this time specifically with Abraham, the first Patriarch of the Jews. Several times, G*d promises Abraham numerous descendants, but none are forthcoming. He is 86 years old when Ishmael is born, only to be driven away due to Sarah's jealousy. What then? Yet Abraham's faith never wavers! When he is 99 years old, he is promised once again,

'I have hereby covenanted with you: You shall be the father of a horde of nations.
Ani hineh veriti itach vehayita le'av hamon goyim.

Once again, the essence of G*d's covenant with humanity is... children.

The Bengali poet Rabindranath Tagore said, "The birth of a child is G*d's way of saying that life must go on."

Friday, October 26, 2012

31 for 21: Progress in Russia

If you understand Russian, check out this video:

This is a Russian newscast, explaining how about 85% of Russian children born with Down syndrome are relinquished to orphanages (identical to the percentage aborted here after a prenatal diagnosis!), and demonstrating their actual potential when integrated in society.

I am actually quite impressed with their diction -- I don't know if they use different speech therapies there, or if Russian phonemes are just easier for people with Down syndrome to master, but all the Russian videos I have seen featuring both adults and children with Ds have been remarkable easy to understand.

And here is a video of a Russian family adopting a child with Down syndrome domestically.

 This is so encouraging to see the change happening around the world, not just here!

31 for 21: Serbia

Serbia has grown very protective of the information about its orphans in the last few years, due to several scandals involving corrupt adoption facilitators and agencies.  Therefore, there are no photolistings available of Serbian orphans.  This does NOT mean that those orphans do not exist, or that they are receiving adequate care in their own country!  There is progress being made, certainly, as some orphans are moved out of institutions and into foster homes.  But many, many more wait.  At the same time, the removal of the corrupt intermediaries has meant that the costs of a Serbian adoption are far lower than other Eastern European countries.

Here is one family in the middle of an adoption in Serbia.  Having requested a child aged 2-4 years old with Down syndrome, they received the files of 4 children.  Of these, they have chosen one.    We do not have names or faces for the others, but they are there.  How many older children wait, as well?  How many with other conditions?    They are no less real than the Russian, Ukrainian, or Bulgarian children profiled on Reece's Rainbow.  Or the Asian, African or Latin American children, for that matter!

If you are interested in learning more about what's involved, you can check out this site.  This is not an agency -- Serbia has not authorized any agencies to operate under the new laws -- just a private site for sharing information by people who have been there.

Wednesday, October 24, 2012

31 for 21: The Ugly Duckling

Mama Duck sat contentedly on her eggs.  Soon they will start hatching!  Finally the big day arrived.  One, two, three, four, five, all the hatchlings came out!  How happy and proud was Mama Duck!  And they all went for a swim in the pond.

Soon, however, she could not help noticing that one of the little ones was.... different.  Didn't look the same, couldn't swim the same, or fish the same as the others.  Even his quacks came out sounding strange, and hard to understand.  Oh, she loved him the same as all the others, but couldn't protect him from the teasing and insults.  Not until he grew up did she fully understand what a beautiful swan he truly was.

Yes, he was.... the duck with Down syndrome.

Tuesday, October 23, 2012

31 for 21: Alexander, Elden and Megan

I was thinking today about the Water and Fire metaphors again.  The children who are in really bad shape make me want to swoop in and save them, but they are, for that very reason, the ones that pose the greatest challenge both to the family and to the community.  I think that the goal is not to be a superhero, but to change the culture in my community so that more children are rescued and more is done to effect social change abroad.  So I want to share today about a couple of children with Down syndrome who would be relatively easy to rehabilitate if adopted.

Here is Alexander:

Alexander just turned 6 a couple of months ago, and is apparently "healthy and doing very well".  He does seem to have a cardiac anomaly ("supplemental chord of the left ventricle") so would need to be checked out by a cardiologist, but it does not seem to be slowing him down much, as he is "sociable and affectionate".  In addition,  there is significant financial assistance available for his adoption, both in the form of a $10,000 agency grant and over $8,000 through Reece's Rainbow.  This is especially significant for an adoption from Russia, where costs range from $30K to $40K in most regions.  Isn't he adorable?  Can you imagine his mouth curling up in a smile or opening in an open laugh while his eyes twinkle and sparkle?

From another region of Russia, here is Elden:


Elden is 5, and will not turn 6 until next February.  Here is a blog post from last year which includes his file pictures back to when he was 2 and a half.

Age 2.5
Age 3.5

He also has a large grant through Reece's Rainbow.  His region is not far from Moscow, and requires 4 trips, but each one is pretty short (a week or less).  Doesn't he look like such a bundle of joy?

From the St. Petersburg region, here is a lovely girl who is 6 going on 7 in December.  Megan has the largest Reece's Rainbow grant, over $24,000:

What a beautiful girl, with a great smile!  She is "active, assertive and social".  Sounds like a spunky little girl!  Wouldn't she be a fun addition to your family and community?

Monday, October 22, 2012

31 for 21: Abortion and NBC

I barely posted this morning post on abortion in Judaism, and my husband sends me this link.  NBC Today chief medical editor Nancy Snyderman is quoted,
“I think the future will be such that you’ll find out that your child may have a genetic hit. You can fix that genetic problem, and improve your chance, a child’s chance…”

Abortion is not a treatment or a cure for any disease or condition.  Abortion does not "fix" a problem, it eliminates the individual presenting with it. Treating it in this fashion is a slippery slope with many potential unintended consequences, ranging from gender selection (which already happens extensively in many parts of the world) to reducing genetic diversity in our population, possibly resulting in harmful downstream effects which cannot be predicted.  Let's say we identify a gene for juvenile diabetes, and "cure" diabetes by aborting all fetuses with that genotype.  What other features would be lost as a result? To what extent would people be desensitized to postpartum euthanasia if the baby comes out "imperfect"? This is a huge pandora's box, even if the premise of pro-choice is granted (which I do!).

With great power comes great responsibility.

What do you think?

Sunday, October 21, 2012

31 for 21: Abortion in Judaism

A couple of weeks ago I wrote some of my thoughts on abortion.  I felt that I should add some Jewish context to the subject, however.   Unlike strict Christianity, even Orthodox Judaism does not consider a fetus to be the equivalent of a full human being.  Abortion in the case of risk to the mother is not only permitted, but is mandatory.  The fetus is seen as trespassing on the mother's body, and can only remain there as long as it is a gracious guest.  Some sources differentiate between the embryonic stage and the fetal stage at the age of 40 days, when the soul is deemed to enter the fetus.  40 days is a number that comes up quite often in Judaism.  It is the number of days that Moses spent on Mt. Sinai producing the Tablets of the Covenant.  This is reflected in the 40 days from Tisha B'Av (commemorating the destruction of the two Temples, but also the sin of the Golden Calf, which supposedly took place on that day) until Yom Kippur, when we have total conciliation with G*d.   Interestingly enough, 40 days is when brain waves begin to be detected.  Although these are not the same kind of brain waves that are associated with conscious thought, the idea that these represent the soul is tantalizing.  Jewish thinkers also vary on the issue of aborting disabled fetuses.  While many argue for abortion in the case of a terminal or severely debilitating condition, more mild birth defects are not seen by Orthodox Jews as warranting termination.   However, even in those cases rabbinic sources frown on abortion, it is not seen as the equivalent of murder, but more of a civil offense on the woman, akin to an amputation.  Even when the fetus warrants consideration, the mother takes precedence.

What does this mean for children with Down syndrome?  Unfortunately, the perception of Down syndrome as a "severe disability" means that many Jewish babies with this condition are aborted.   There are those who are working to reverse this trend, given the rapidly improving prognosis for people with Down syndrome today.   I hope to be one of these!

Thursday, October 18, 2012

31 for 21: Torah Connection - Noach

I think I want to make Torah Connection a regular weekly feature.  Here is last week's installment, the beginning of Genesis.

I was teaching my 4-year-old the following verse from this week's Torah Portion, taken from G*d's promise to Noach after the Flood:

'I Myself am establishing a covenant with you and your offspring after you.
Va'ani hineni mekim et-beriti itechem ve'et-zar'achem achareychem.

The connective word "et" does not have an English equivalent.  It links a verb to a direct object.  What is interesting here is the grammatical role of "and your offspring after you".  This is generally translated as being connected to "with", but grammatically, it is a direct object going back to the verb, "establishing".  This parallelism seems, in my reading, to be emphasized in that both "et-beriti" (my covenant) and "et-zarachem" (your offspring) are hyphenated. 

This means, that our offspring are "established" by G*d, and are linked to the divine covenant.  I find that a very interesting way to think about children.  What do you think?

Tuesday, October 16, 2012

31 for 21: Who will save Sasha?

Whoa!  Somebody is looking out for Sasha:

Sasha was recently transferred to a remote, underfunded mental institution for older children and adults.  He is getting no care or attention there.  He is probably grossly underfed and only getting one diaper change a day.  

But somehow, his grant at Reece's Rainbow has grown to nearly $10,000 lately.  Will that encourage someone to look past Sasha's scary needs and go to that mental institution and rescue him?

His profile speculates on whether he has Cerebral Palsy and/or Autism in addition to Down syndrome.  We do not know if his behavior and severely delayed development is caused by these or other possibilities, or just due to institutionalization.   We do know that he is TINY!  Look at him in the caregiver's hands, like a little baby.  He does seem to be holding his head well in the second picture, while in the earlier one he is still flopped over.  Am I totally crazy to think that he has the potential to grow and develop?  Is there anyone out there "crazy" enough to help him do so?

Sunday, October 14, 2012

31 for 21: Torah Connection - Bereishit

Yesterday we read from Bereishit -- the first chapter of the book of Genesis.  It starts with the creation of the cosmos and ends with the genealogy of Noach, and G*d's frustration with the decadence of humanity.

The haftorah portion for this week is from Isaiah, and expands on Israel's role and mission in the world.

First, the link to the Torah portion, G*d as the Creator:

5 Thus said God the Lord,
Who created the heavens and stretched them out,
Who spread out the earth and what it brings forth,
Who gave breath to the people upon it
And life to those who walk thereon:

And here is Israel's assignment, the true meaning of being "Chosen":

6 I the Lord, in My grace, have summoned you,
And I have grasped you by the hand.
I created you, and appointed you
A covenant people, a light of nations —
7 Opening eyes deprived of light,
Rescuing prisoners from confinement,
From the dungeon those who sit in darkness.
 After several verses extolling G*d and Creation, we get to this:

13 The Lord goes forth like a warrior,
Like a fighter He whips up His rage.
He yells, He roars aloud,
He charges upon His enemies.
"I have kept silent far too long,
Kept still and restrained Myself;
Now I will scream like a woman in labor,
I will pant and I will gasp.

I love the role of G*d (and by extension, Israel) in fighting injustice both from the masculine and feminine perspective here. The reading continues with an elaboration on G*d's powers, building up to this guarantee of divine protection:

16 I will lead the blind
By a road they did not know,
And I will make them walk
By paths they never knew.
I will turn darkness before them to light,
Rough places into level ground.
These are the promises —
I will keep them without fail.

These are not promises to make our challenges easy -- just to make them possible.

The "short version" of the haftorah pretty much ends there.  The long version continues, and ends with this explanation of the People of Israel as exemplifying proof of G*d's existence to the nations of the world.

9 All the nations assemble as one,
The peoples gather.
Who among them declared this,
Foretold to us the things that have happened?
Let them produce their witnesses and be vindicated,
That men, hearing them, may say, "It is true!"
My witnesses are you
—declares the Lord—
My servant, whom I have chosen.
To the end that you may take thought,
And believe in Me,
And understand that I am He:
Before Me no god was formed,
And after Me none shall exist —
 The bolded section here is often misread in Christianity as referring to Jesus.  Rather, it is the People of Israel who are the chosen servant.  It is the task of every Jew to be a Light Onto the Nations, and to create a community that manifests G*d's glory.

Friday, October 12, 2012

31 for 21: A different SN adoption story

Do you think that only Fundamentalist Christians adopt one special needs child after another, beyond their means, and without carefully planning each new addition's future?  It is easy to shake your head and say, Oh, they are just religious nutcases.  Anyway, it can't be good for that many special needs children to live in one home, they can't possibly get all the attention they need.  Etc. etc.

Meet Mama Kong.

She is secular, poor, and has a disability herself (she is hunchbacked).

She is 63 years old.

She and her husband have adopted over 30 children, all with special needs, ranging from cleft lip/palate to severe cerebral palsy.

They live in rural China, in a small rundown shack in a village with no running water.  The children are all abandoned, the victims of China's "one child rule" and extreme pollution which results in one of the highest rates of birth defects in the world.

In addition to the intrinsic challenges of managing the health, emotional and educational needs of all these children, Mama Kong regularly has to stand up to the bureaucracy of the Communist Party itself.

Wow.  Just wow.

Speak truth to power much?

(Ooops, forgot to Hat Tip Leah!)

Thursday, October 11, 2012

31 for 21: Pity


When do we want pity?  We all get into "pity-parties" sometimes.  It's not a pretty sight.  Feeling sorry for oneself is perfectly natural, but it is a particularly unproductive form of self-gratification.

When we are truly in need, we do not want -- or need -- pity.  We want help.  We want empowerment.  We need self-respect and dignity.

Pity is a form of condescension.  When we pity someone, we do not respect them.  We do not expect them to rise above their current condition.  Ultimately, the kind of help offered through pity serves to perpetuate the state of inferiority.  It serves to make the pitier feel good about him/herself without serving the needs of the pitied.

Please do not pity people with disabilities.  They have "special needs" -- don't we all, sometimes?  If someone needs extra help to see, walk, or learn, either temporarily or permanently, then we should work towards meeting those needs.  Plain and simple.  Learn what the needs are, then see how you can help, not out of pity, but out of empathy -- because that's how you'd want to be treated.  If you can help by being a friend, great!  If you can help by volunteering time or money, great!  If you devote your life, either personally or professionally, to helping others, great! Whatever you can do to meet the needs you see around you will help.  Pity?  Not so much.

I pity the fool.

31 for 21: Disability? What disability???

 Pure inspiration!!

Wednesday, October 10, 2012

31 for 21: Infantile spasms

I just read something about Down syndrome that I didn't know! 

Noah's Dad wrote about Infantile Spasms, which apparently occur in 8-10% of all children with Down syndrome.  They are easy to miss, and also easy to confuse with other, benign behaviors of Down syndrome children.  However, these spasms can lead to severe developmental regression.  Apparently there is a very expensive steroid treatment which can reverse the damage.  Please read the info at the link.  It is fascinating!

This seems to offer an explanation of why most kids with Down syndrome seem to do really well with aggressive therapy, while some seem to be stereotypically "profoundly delayed" -- non-verbal, non-mobile, totally dependent.  It also might explain why some of the children in the orphanages are placed in the "laying down" rooms at an early age, and end up doing very poorly.  Some of them are even listed with "epilepsy" -- could that be a misdiagnosis of infantile spasms?  Certainly, a child who is already delayed due to Down syndrome, compounded by orphanage delays, cannot afford the additional handicap of seizure-induced regression.  If they are not seen to be mobile, they are left in their cribs.  If they cannot self-feed, their bottles are propped for them.  They are not given any opportunities to interact with the environment, and they sink lower and lower.  They can be redeemed by a dedicated family, but the effort required for every step of progress is quite intensive!

Most of the orphans with Down syndrome, however, do develop rudimentary skills, which they can build on rapidly when placed in a loving family setting with the usual therapy regimen.

It really puts a different spin on the whole Water and Fire thing.

31 for 21: Simchat Torah

I totally missed blogging about Simchat Torah yesterday.  This is the final holiday in the busy month of beginnings -- Tishrei.

We start with a new year.
Then we turn over a new leaf when we atone for our sins on Yom Kippur.
We spend 7 days in the sparse structure of the Sukkah for Sukkot.
And on Simchat Torah we do the Great Rewind -- we unroll the entire parchment scroll of Torah, and roll it back up to the Beginning -- a new start to reading the Pentateuch. "In the beginning, when G*d created the heavens and the earth...."

It is noted that the last letter of the Torah is "Lamed".
The first letter of the Torah is "Bet".
Together, they spell "Lev" = "Heart".
On Simchat Torah we dance with the newly-rewound scrolls with joyous abandon, pouring our hearts into the words that have sustained our people for millenia.

In the Beginning.

Tuesday, October 9, 2012

31 for 21: Why community is important

For this installment of 31 days for Trisomy 21 awareness, I want to talk about the benefits of helping children with special needs in a community.  My faith community includes several well-integrated children with Cerebral Palsy, but I have seen very few other disabilities represented.  There is one child in my children's school with Down syndrome.  Other than that, there's the usual crop of ADHD, and the occasional case of Asperger's.

A blogger I quoted a couple of days ago answered the following question from a reader today:

When I had my son 10 months ago, he was born with Down syndrome and while I didn’t know any of the health implications, the first thing that came into my head when I saw him, was, “Oh no, he is not going to be smart and he will be hard to understand when he speaks.” I want to know why I had that expectation because reading your blog and others has proven the “not smart” part very wrong. My son proves to me each day how smart he is by how hard he works and fought to live through heart surgery and feeding difficulties and how hard he works now. Every person who I’ve talked to since my son’s birth has said how enjoyable it has been to work with people and children with Ds. If people with experience in this know the truth, why is the opposite a commonly held if false belief? Who is spreading this lie about what smart looks like? I’m chagrined that I felt that way about my son at this birth and grateful that I found reality to be better than I had expected. That is what I want Down syndrome awareness month to do – to give people a good gut feeling when they think about Ds, and not a pit of fear and discomfort and pity.

Your questions may have been intended to be rhetorical, because I’m just one person and unlikely to know The Answer, but I’ll give you my opinion. I’ll take the second question first, because it’s the toughest.
    There is no doubt that medical textbooks repeat the “facts” about IQ, as does virtually every website or clinical resource available. Doctors (who, I might add, are generally people who value intellect) are taught in medical school that people with Down syndrome have lower IQs – i.e., that they aren’t smart. Of course, the belief isn’t limited to doctors, but having the experts say it does lend it more credence, don’t you think?
     People tell us all the time that Nathan is “smart” and I often wonder what they mean. Smart for Down syndrome? Smart compared to typical kids? Clever? Are they just being nice (I don’t believe that one). His new preschool teacher, who’s been in the business for years, says she doesn’t see any difference in him intellectually than the typical kids.
     The answer to the first part is probably that the people with experience are too few and the people without it are too many. That’s why inclusion is SO important. Case in point: the story I linked to in Sun-Beams recently about the young woman crowned Homecoming Queen at her high school. The media made a big deal about it, but the students didn’t understand why it was a big deal. She was well-liked so she won – end of story. The more our kids spend time with their typical peers, the more comfortable people will be Down syndrome.

Quite besides the benefit to a child who is being rescued from a dead-end situation in an orphanage or mental institution, bringing children with special needs into a society that increasingly sees prenatal diagnosis and abortion as an acceptable "cure" for congenital differences can bring about a change in perspective.  Learning to appreciate people with very different abilities creates a richer community, where the "typical" spectrum is broadened.  After all, once you have learned that it makes no sense to bully someone because of a severe or obvious disability, does it really makes sense to bully someone who is short, or lisps, or wears glasses?  Once we have learned to appreciate the internal qualities of people who look different, will we be so "look-ist" in our selections of friends and spouses?

31 for 21: Abortion

I am pro-choice.  I don't believe that government belongs between the patient and the doctor.  This is not because I think abortion is not problematic, but because I think that the dangers of prohibition are greater than those of legalization.  As with drugs and alcohol, prohibition creates a black market, as well as worse quality control and legal recourse for victims.   I remember when the pro-choice slogan was, "Abortion should be safe, legal and rare".  Then that gradually morphed into "...safe, legal and funded."  Can you imagine if the same logic was applied to drugs and alcohol?  If tax money was used to fund pot-smoking college kids under the pretext that in some cases, medical marijuana is justified?  Is abortion becoming any more rare?

As with medical marijuana, I believe that there are cases where abortion is justified.  This decision should remain between the parents and the doctors.  I believe that just as with other medical decisions, patients should be provided with full and accurate information about the nature of the procedure and the level of fetal development.  This should NOT be an easy decision.

Around 90% of prenatal diagnoses of Down syndrome result in abortion.  This is at a time that medical and educational advances are making unprecedented leaps in the prognosis of children born with Down syndrome.  Instead of seeing these advances, however, most people are seeing fewer and fewer children with Down syndrome in their communities.  As a result, we are left with 20-year-old notions of what the diagnosis means.  Medical professionals, instead of encouraging parents to have their children with Down syndrome, reinforce these outdated notions and encourage aborting children with Down syndrome, whose potential if born is growing with every passing year.

I am reminded of Aldous Huxley's Brave New World, where the character "John Savage" finds out that in this new society, mosquitoes have been eliminated:

“The Savage nodded, frowning. "You got rid of them. Yes, that's just like you. Getting rid of everything unpleasant instead of learning to put up with it. Whether 'tis better in the mind to suffer the slings and arrows or outrageous fortune, or to take arms against a sea of troubles and by opposing end them...But you don't do either. Neither suffer nor oppose. You just abolish the slings and arrows. It's too easy." 

Seems that is what our society is doing with special needs.  Rather than learning to work with the special challenges involved and grow as individuals and as a community, we seek to eliminate the challenges so we don't have to confront them.  Now, certainly we want to promote good prenatal nutrition, avoid drug and alcohol use, etc.  We don't want to induce problems!  But when is a challenge intrinsically a "problem  to be fixed" (e.g. avoiding Fetal Alcohol Syndrome) and when is it something that we should embrace? Is abortion an acceptable solution to birth defects, or is it a slippery slope to eliminating whole subsets of the population, depriving our whole society of this diversity?

Sunday, October 7, 2012

31 for 21: Buddy Walk 2012 Pictures!

Wow, what a day!  My little ones were real troopers, and walked about half of the 3-mile walk before settling in to their strollers and falling asleep for their naps.  (Sorry, no pics of cute sleeping boys).  We were near the end of the march.   Apparently around 3000 people attended!

Of course, the first thing we did when we got there was get our autographed photos of Lauren Potter (Becky from Glee):

We also got to hear her talk, and she was absolutely delightful!  She also received an award from an appreciative supporter:

There were other performers as well, and lots and lots of cute kids everywhere!

Thank you to everyone who supported us!

Saturday, October 6, 2012

31 for 21: Disability?

A quote about disabilities from a mom of 2 (neither one adopted), one with Cerebral Palsy and one with Down syndrome:

"The thing is, no one is perfect – we all have flaws. Throughout life, we each choose how much we will reveal our flaws to those around us. People with disabilities have awesome strengths. The main difference is that they can’t hide their weaknesses like the rest of us."

Buddy Walk tomorrow!  Please sponsor us if you haven't yet.

Friday, October 5, 2012

31 for 21: Water and Fire

I suddenly realized that these two metaphors represent one of the main questions in the adoption journey: What is the vision for the adoption?

Some people are "Fire" adopters.  They learn about a country, or an individual institution, or an individual child in dire need, and are driven to rescue the neediest of them.  As the Christians say, "the least of these".  These children may have severe special needs, extreme malnutrition and neglect, and/or be older.  They may take this on because they have medical training that has prepared them for the extra care required.  They may have other children with similar special needs.  Or they may be filled with a sense of commitment and faith that bolsters them to do whatever it takes.  I certainly find these stories inspiring, and wonder if my family and my community could handle one of these.  I wonder how many people would follow that example, rather than write it off as "you're crazy" or even just "wow, I could never do that".

Then there are the "Water" adopters.  They, too, learn about the neglect suffered by children with special needs in developing countries, and are moved to take action.  But they reason, "Let's rescue a child who is still young enough and healthy enough that his/her needs will be more manageable.  Let's rescue a child before they become needy enough to require a "Fire" adopter to be saved."   The babies and toddlers I posted about recently fall into that category, as do most of the children in the 3-5 year old category and many of the 6- to 9-year-olds.  These stories are also inspiring, but in a much more low-key way.  Mostly, they are stories about adorable children being loved by their families and blossoming instead of falling further and further behind in an orphanage.  I can definitely see people in my community being open to this possibility if they saw an example of it.  These stories have a much more normal feel to them.

Which brings us to the final metaphor.

You are walking with your friends and family along the road.  On one side of the road is a lake, filled with drowning children.  On the other side, is a burning schoolhouse.  What do you do? Do you stand there paralyzed because you can't save everyone?  If not, do you run into the fire, swim into the lake, or run down the road ahead as fast as you can so you don't have to hear the cries...?

Religion Connection, for those who want it:

1. We just passed Yom Kippur, when we not only repent of our sins, but we contemplate our own mortality.  We ask,
"who will live and who will die; 
who will die at his predestined time and who before his time; 
who by water and who by fire...."

 2. Proverbs 24:11-12:
If you refrain from rescuing those taken to death and those on the verge of being slain will you say, "Behold, we did not know this"? Is it not so that He Who counts hearts understands, and He Who guards your soul knows, and He will requite a man according to his deed?

Thursday, October 4, 2012

31 for 21: About that fire

As I said in a previous post, I don't think that special needs adoption should be like running into a burning house to rescue children.  It should not be scary and dangerous.  It is a challenge, to be sure, but one that many more people could probably handle.  But there is an aspect of that metaphor that I want to pursue further.

If a house is burning, the first thing one should do is call 9-1-1.  The firefighters will come, and start to put out the fire.  At the same time, firefighters and other brave souls will run in to save the people caught inside.  In this analogy, the firefighters putting the fire out are like the charities that try to improve orphanages and social structures so that other countries can catch up with the USA in taking care of children with disabilities. Eventually, most children with disabilities could be taken care of at home, and the few who are relinquished can be handled by foster care.

The firefighters and brave souls who rush into the blaze are like the families whose blogs I've frequented, who rescue children from the orphanages and institutions, blazing a trail for others.   But reading a story about a hero is not the same as being there.  If when you came upon the scene in the original post, you were not alone but with a friend, and if your friend rushed in, how much more likely would you be to follow the example?  If you were with a crowd of friends, and several rushed in, would you join them, or would you stay with the others outside?  Would you be the type of person who, knowing that others will follow if anyone would lead, become that leader?

Yes, there are legitimate helping roles for the ones outside, but how many more of us would rise to the challenge of heroism -- whether the burning building variety or the drowning child of my followup post -- if we were in a community where this was considered the norm?

Wednesday, October 3, 2012

31 for 21: I love home-preschool!

Just sayin'.  I love exploring a topic, or a skill set, and watching the 4-year-old and the 2.5-year-old grapple with it each on his own level. Love it, love it, love it!  I can just see integrating a little child with Down syndrome into the mix.  Yum!

For example, when we do the Buddy Walk on Sunday, the 4-year-old will definitely walk the whole time, but his little brother will probably take breaks in the stroller.  Will you please sponsor us?

31 for 21: The greatest special need

Check out the Reece's Rainbow pages for the youngest boys and girls with Down syndrome.  They are so squishy and adorable!  And so young, that their delays are not severe yet and would easily be overcome with some PT, OT, ST and LT (Love Therapy).  However, notice how many of them are from Russia (with a number and a letter after their name  -- e.g. 2H is St. Petersburg region, 15H is Moscow, etc.).  Russian adoptions are expensive -- usually $35-40K!    A few of the children have significant RR grants or agency grants, but the rest are probably going to stay on the rolls, getting older and more delayed.

What a pity -- the greatest special need that holds families back from adopting these kids is the one that is imposed on them by the adoption bureaucracy -- money!

ETA: I did some rough arithmetic, and it would take nearly $4 million to pay for the adoption of the100+ babies and toddlers with Down syndrome listed on RR, about 75% of whom are from Russia.

Tuesday, October 2, 2012

31 for 21: A mid-life crisis?

It has been suggested that my obsession with saving children with special needs from terrible places is a mid-life crisis.

What is a mid-life crisis?  It is a transitional age.  "Terrible Twos" is a transitional age between infancy and childhood.  It is characterized by tantrums, as the toddler's abilities lag behind his/her imagination.  Puberty is a transitional age between childhood and adolescence, marked by moodiness and rebelliousness, as maturity comes unevenly, and the youth is caught in an uneasy flux.  Yet another transition marks early adulthood, as independence from one's parents is finally established.

 A mid-life crisis is another such transition.  It is a time when an adult comes to grips with being "old".  Usually this process takes a few years, during which said adult resists it, clinging onto the trappings of youth in some fashion or another. As with other transitional ages, we are expected to "grow out of it".

Am I having a mid-life crisis?

There is a small grain of truth in it.  One butterfly-wing that fluttered me in this direction was the decision that, at my age, I do not wish to bear any more children (barring birth-control failure, acts of G*d, etc....).  Just too hard on my body, too risky, etc.  Then I realized that I kept telling people that I love mommy-ing so much, that if I was 10 years younger, I'd keep going.   So in part, yes, I am aware of aging, and that awareness is probably contributing to a sense of urgency about this cause.

The cause itself, however, is not at all indicative of a mid-life crisis.  It is the same idealism I have transferred from one cause to another since my teens.

25 years ago, I went to college hoping to study biochemistry, become a research scientist, and discover wonderful cures to things like cancer.  Didn't pan out.  I wasn't that good at my biochemistry classes, and the lab work was tedious and didn't seem very inspiring.  The big project of the day was mapping the human genome.  Really important and impressive as a whole, yes, but ultimately a tedious process of filling and centrifuging thousands of test-tubes, and then entering reams of data.  Yawn.  I do not want to devote my life to being a cog in a machine.  At least, that's how it looked to me as I walked away from that.

20 years ago, I was working at a career that I found fun and challenging, but not particularly inspiring.  I channeled my idealism into political activity.  I ran for local office, and decided that I hated selling myself for votes.  I have since continued to participate in political causes I support, but this would not be the motivating force in my life, either.

10 years ago, I was a stay-at-home mom with 3 young children, and I loved teaching them and watching them grow, so I went back to school and got a Master's degree in Education.  I had visions of being a female version of Jaime Escalante ("Stand and Deliver"), inspiring girls to pursue math.  Once again, that didn't quite work out.  I love teaching, but classroom management and faculty politics.... not so much.  I now tutor privately, which is great, but I'm not going to have the kind of dramatic effect on kids' lives that I want to.  I have several former students who turned from timid C-students to confident A-students.  But in the grand scheme of things, this is not the stuff of legacies.  I thought about maybe one day becoming a rabbi.

Now I am once again a stay-at-home mom.  I am actively home-schooling my youngest 2, while helping the others with homework and puberty (see above).  I am still tutoring.  I am still politically involved.  I am blogging. And I still want to make my mark on the world.  I don't intend to ever grow out of that!

No, I'm not having a mid-life crisis.  I am too busy for it!

Speaking of busy, this Sunday my family is participating in the Down Syndrome Buddy Walk.  Will you sponsor us?

Jewish Bloggers
Powered By Ringsurf