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.

Torah Connection - Shlakh-lekha

What a powerful parsha!

Here we read the famous story of the spies.  Twelve men, representing each of the twelve tribes, reconnoiter the Promised Land in anticipation of imminent entry. Ten of them return with fearsome tales of the land and its inhabitants, and only two affirm that the land is a good land and that the people should proceed according to plan. G*d gets angry, Moses argues with him, and G*d decrees that the current generation will continue to wander in the desert for 40 years more, until they all die out, and only their children (and the 2 faithful spies) will merit entering the Land of Israel.  Now the people realize their error, and some people try to invade Canaan without G*d's Presence.  They are roundly trounced.


Let's look more closely at the evolution of the people's psychology.

²⁷ This is what they told him: "We came to the land you sent us to; it does indeed flow with milk and honey, and this is its fruit. ²⁸ However, the people who inhabit the country are powerful, and the cities are fortified and very large; moreover, we saw the Anakites there. ²⁹ Amalekites dwell in the Negeb region; Hittites, Jebusites, and Amorites inhabit the hill country; and Canaanites dwell by the Sea and along the Jordan."

This is intimidating, but factual, and includes the upside - it is a good land, "as advertised". The proposition does involve a good deal of risk, though -- the land is populated with powerful nations, whose cities are well fortified.

Caleb (one of the faithful spies) attempts to rebut them:

³⁰ Caleb hushed the people before Moses and said, "Let us by all means go up, and we shall gain possession of it, for we shall surely overcome it."

Short and concise pep-talk.  However, it backfired, as the other spies intensified their negativity, shifting their focus from risks to fears:

³¹ But the men who had gone up with him said, "We cannot attack that people, for it is stronger than we." ³² Thus they spread calumnies among the Israelites about the land they had scouted, saying, "The country that we traversed and scouted is one that devours its settlers. All the people that we saw in it are men of great size; 33 we saw the Nephilim there — the Anakites are part of the Nephilim — and we looked like grasshoppers to ourselves, and so we must have looked to them."

Now their appraisal is no longer factual, but subjective and sensationalized.  And in fact they spark the imagination of the people, who respond with visceral fear:

Chapter 14¹ The whole community broke into loud cries, and the people wept that night. ² All the Israelites railed against Moses and Aaron. "If only we had died in the land of Egypt," the whole community shouted at them, "or if only we might die in this wilderness! 3 Why is the Lord taking us to that land to fall by the sword? Our wives and children will be carried off! It would be better for us to go back to Egypt!" 4 And they said to one another, "Let us head back for Egypt."

 Caleb and Joshua (the other faithful spy, who will later take the mantle of leadership over from Moses and lead the people into the land) now try to restore sanity:

 ⁶ And Joshua son of Nun and Caleb son of Jephunneh, of those who had scouted the land, rent their clothes ⁷ and exhorted the whole Israelite community: "The land that we traversed and scouted is an exceedingly good land. ⁸ If the Lord is pleased with us, He will bring us into that land, a land that flows with milk and honey, and give it to us; ⁹only you must not rebel against the Lord. Have no fear then of the people of the country, for they are our prey: their protection has departed from them, but the Lord is with us. Have no fear of them!"

But it is too late.  The people are hysterical:

¹⁰ As the whole community threatened to pelt them with stones, the Presence of the Lord appeared in the Tent of Meeting to all the Israelites.

Now G*d appears, and as He and Moses haggle over their fate, the people are shamed into regret:

³⁹ When Moses repeated these words to all the Israelites, the people were overcome by grief. ⁴⁰ Early next morning they set out toward the crest of the hill country, saying, "We are prepared to go up to the place that the Lord has spoken of, for we were wrong."

Moses explains to them that without G*d's favor, such a mission would be doomed, but they ignore him, and  meet the predicted failure:

⁴¹ But Moses said, "Why do you transgress the Lord's command? This will not succeed. ⁴² Do not go up, lest you be routed by your enemies, for the Lord is not in your midst. ⁴³For the Amalekites and the Canaanites will be there to face you, and you will fall by the sword, inasmuch as you have turned from following the Lord and the Lord will not be with you."
⁴⁴ Yet defiantly they marched toward the crest of the hill country, though neither the Lord's Ark of the Covenant nor Moses stirred from the camp. ⁴⁵ And the Amalekites and the Canaanites who dwelt in that hill country came down and dealt them a shattering blow at Hormah.

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What can we learn from this?  First, that letting a rational assessment of risk turn into a debilitating fear can have consequences nearly as bad as our fears projected...

Second (though some would say this is first), taking the risk without spiritual backing is a really bad idea.  Even if you do not believe in G*d per se, it is clear that the defiant marchers were missing an important ingredient for success. We see this in many enterprises today, where the lack of a vision, a divine mandate to go forth and achieve greatness, can cause people to crumble before the opposition. On the other hand, having the simple faith that "we shall surely overcome it" can give people the fortitude to overcome substantial odds.

Suffering

I love this from the comments section:

 I had a Disability Support Worker once ask me “What does your son suffer from?” I told her … “Well, he has Down syndrome, but he suffers from people’s ignorance.”

Co-morbid conditions

Trisomy 21 is largely scary not for itself, but due to all the "other things that can go wrong".

Another blogger-mommy put it succintly:

 here is a list of things that can "go wrong" if you happen to have Trisomy 21.  Here's a list of things that can "go wrong" if you are human:

It's a big list...

Following a story

One of the first children who caught my attention on Reece's Rainbow when I first discovered it last year was a little Russian boy with the profile name "Arnold".  He was approaching his 4th birthday, at which point he would be likely transferred to an older-children's orphanage with poorer care, or even an adult mental institution.  His region only considered families with up to 3 children for placement, so I knew that even if by miracle my family got on board with this idea AND we did all the background paperwork, we would not qualify, but I kept following him as a Mormon family committed to him, finally bringing him home just in the nick of time before Russia stopped adoptions to Americans.

This boy has been home for several months, and I still like to check up on how he is doing, as I follow many stories on my sidebar.  On the spectrum of T21 adoptions, he is remarkably high-functioning, and seems to be adapting beautifully to family life.  And he is a cutie, too!

Ideas for next year

This past Monday I finally had the opportunity to present and discuss my proposal to put special needs on the Tikkun Olam agenda for next year.  It was really well received!  Several people were motivated to work with me towards making some specific proposals to be presented at the June meeting, when the actual agenda will be put together.

I think that the following would be doable:

1. Organize a group to represent us at one or more Down Syndrome Buddy Walks in our area.  This will allow us to make connections in the wider special needs community.

2. Sponsor a screening of Praying With Lior, followed by discussion. Depending on how it goes, this may lead to screenings of other topical movies TBD.

3. Collaborate explicitly with Gateways, a local Jewish organization which provides Jewish education including Bar/Bat Mitzvah preparation, to children with all kinds of special needs.  Specifically, invite a representative to speak to our Bnei Mitzvah group about their Mitzvah Mensches program, hopefully leading to year-long cooperation, creating a framework for greater integration in the next generation.

4. Plan to coordinate with other congregations and organizations for Jewish Disabilities Awareness Month, so that we have representation at events and can learn from others' experiences.


I am so excited to work with the other members of the group to make these ideas - and who knows what else - become a reality!

Torah Connection - Baha'alotkha

This week, the sacred tasks are handed to the various sub-groups of priests, the first post-exodus Passover is celebrated, and life settles into something of a routine for the traveling former slaves.  Alas, boredom leads to whining, and whining - as we all know - leads to parental fatigue:

10 Moses heard the people weeping, every clan apart, each person at the entrance of his tent. The Lord was very angry, and Moses was distressed. 11 And Moses said to the Lord, "Why have You dealt ill with Your servant, and why have I not enjoyed Your favor, that You have laid the burden of all this people upon me? 12 Did I conceive all this people, did I bear them, that You should say to me, 'Carry them in your bosom as a nurse carries an infant,' to the land that You have promised on oath to their fathers? 13 Where am I to get meat to give to all this people, when they whine before me and say, 'Give us meat to eat!' 14 I cannot carry all this people by myself, for it is too much for me. 15 If You would deal thus with me, kill me rather, I beg You, and let me see no more of my wretchedness!"

Moses is likening himself to an adoptive parent!  And he is resenting the peoples' growing pains.And G*d responds,

16 Then the Lord said to Moses, "Gather for Me seventy of Israel's elders of whom you have experience as elders and officers of the people, and bring them to the Tent of Meeting and let them take their place there with you. 17 I will come down and speak with you there, and I will draw upon the spirit that is on you and put it upon them; they shall share the burden of the people with you, and you shall not bear it alone.

Wow - the solution to parental fatigue is - community!  Who'd'a thunk?
He continues:

18 And say to the people: Purify yourselves for tomorrow and you shall eat meat, for you have kept whining before the Lord and saying, 'If only we had meat to eat! Indeed, we were better off in Egypt!' The Lord will give you meat and you shall eat. 19 You shall eat not one day, not two, not even five days or ten or twenty, 20 but a whole month, until it comes out of your nostrils and becomes loathsome to you. For you have rejected the Lord who is among you, by whining before Him and saying, 'Oh, why did we ever leave Egypt!'"

The answer to the whining is to provide such plenty that plates are turned back.  How similar to stories of adopted children, who typically hoard both food and possessions until they are secure in the knowledge that their new family will continue to provide, and that food will always be available.

The title of this parsha - "Baha'alotkha" - literally means "as you raise up".  In context it refers to the ceremonial lamps, but this seems like good advice for "raising up" children, as well.

Rumplestiltskin

My boys' latest cinematic obsession has been the Shrek series. They know much of the dialog by heart, and act it out in their play. R is fond of wearing a hat and boots (even in 80 degree weather) and sticking a pencil in his pants and announcing that he is Puss in Boots. M wrote SHREK in bubble letters on a piece of paper, folded it up small, and carries it around in his shirt - it's his contract with Rumplestiltskin.  Every so often R will snatch it from him an throw it down the stairs, precipitating some intense preschool fisticuffs.

Then last week my 14-year-old introduced us to the series "Once Upon a Time", and we Netflix'ed the first several episodes.   A new family TV addiction!  (Just like the old days when we watched a whole season of Glee over winter vacation.)  Contracts with Rumplestiltskin play a major role in the plot!

What is it about Rumplestiltskin?

On one level, he is an incarnation of the wish-granting genie.  Ask what you will, you will get it.... but not the way you wanted.

On the other hand, with Rumplestiltskin you get exactly what you wanted, how you wanted it, and you will be fully satisfied with the results.  Until the price is to be paid.  The price that always seems so insignificant in the heat of the moment when you sign the dotted line. Then, when it comes due, it is all consuming.

In religious mythology, we see this kind of deal-making with the Devil.  Rumplestiltskin doesn't ask for your soul, but ultimately that is what his victims must face.

It's all about control.  We want to control our lives, to have more "good stuff" and less "bad stuff".  When we are little, we follow the genie model:  We want to have lots of candy, but if we get our wish, it will come with a tummy-ache.  As we get older and more sophisticated, we recognize that every benefit we seek will come at a price, and we start making deals with Rumplestiltskin.  We read the fine print.  We think we know what we are getting into.  As in the Rumplestiltskin stories, there is usually an "escape clause" that we try to use to avoid the downsides of our choices.  Sometimes we succeed!

=======

Let's talk about family planning.  People want to delay childbearing until they are financially secure, as well as limit their family size to something "manageable" -- usually 2 or 3 kids at most.  Of course, by the time you are financially secure, even 2 or 3 kids seems like alot -- an only child you can tote everywhere with you, but any more than that really takes over your life, at least for a few years.

However, then comes Rumplestiltskin's price.  Your only child has waited until his/her 30's to have children, following your example.  Now you are in your 70's, struggling with creaky bones and failing health, just when you want more than anything to help out with your grandchildren.  Will you live to see them graduate?  Your child now has to rely more heavily on babysitting.  Forget weekend (or longer) getaways!  No aunts or uncles either, in an only-child culture.....  Was it worth it?

What price do we pay for Rumplestiltskin's bargain?

=======

Or prenatal testing.  Seems like a good idea -- if you consider the fetus "not a child yet" then what's the harm in terminating a "defective one" and starting over, so "your child" has the best chance in life?

What actually gives children "the best chance in life"?  There are advocates for many theories: nutritional, social, familial, educational....  But most of these are only loosely correlated with success.

A famous study from 50 years ago, however, showed that the ability to delay gratification was strongly correlated with future success, both professional/educational and social/relational. So teaching our children patience is a good step to take.

As I was googling for that link, I saw this followup study.  Apparently, there is more that goes into children's behavior on the Marshmallow Test than the simple ability to delay gratification.  Expectations about the trustworthiness of adults in general and the experimenter in particular can provide the incentive -- or lack thereof -- to exercise such an ability.  Children who experience predictable, trustworthy adults in their lives are motivated to persist in the face of adversity, and resist temptations to go astray.

So, does a "genetically perfect" child have a better chance in life than one who is born with challenges? Only if the parents allow their feelings about it keep them from teaching him/her patience and trust.  We read many stories about people with all sorts of disabilities accomplishing great things.  We also know far too many healthy, able-bodied individuals who waste their lives away.

To what extent is the preoccupation with fetal perfection actually keeping both parents and children from learning the lessons that are truly valuable?  What price do we pay for Rumplestiltskin's bargain?

========

There is also a long-term societal price for the ever-expanding informal eugenics practiced by millions of parents.  As we eliminate diversity from the gene pool, we limit the data for medical science.  Working with people with T21 has provided biomedical researchers with a wealth of knowledge on the workings of leukemia, Alzheimer's, and many other conditions.  Educational techniques developed for children with T21 turn out to support the diverse learning styles of all children.  Progress that fails to happen is a subtle, invisible loss to humanity, but it is a loss just the same.

What price do we pay for Rumplestiltskin's bargain?

Torah Connection - Naso

OK, I'll take the easy way out.  I will not grapple with issues of the treatment of the Sotah or the Nazir in this parsha, nor rehash the rationale behind 12 identical offerings from the leaders of each tribe.  You can look here if you want to, for a whole lot of interpretations.

This parsha contains the Priestly Blessing, traditionally offered by those of "Kohen" birth in Orthodox congregations, as well as by parents for their children on Shabbat and upon life cycle events.

וַיְדַבֵּר יְהוָה, אֶל-מֹשֶׁה לֵּאמֹר.	22 And the LORD spoke unto Moses, saying:
כג  דַּבֵּר אֶל-אַהֲרֹן וְאֶל-בָּנָיו לֵאמֹר, כֹּה תְבָרְכוּ אֶת-בְּנֵי יִשְׂרָאֵל:  אָמוֹר, לָהֶם.	23 'Speak unto Aaron and unto his sons, saying: On this wise ye shall bless the children of Israel; ye shall say unto them:
כד  יְבָרֶכְךָ יְהוָה, וְיִשְׁמְרֶךָ.	24 The LORD bless thee, and keep thee;
כה  יָאֵר יְהוָה פָּנָיו אֵלֶיךָ, וִיחֻנֶּךָּ.	25 The LORD make His face to shine upon thee, and be gracious unto thee;
כו  יִשָּׂא יְהוָה פָּנָיו אֵלֶיךָ, וְיָשֵׂם לְךָ שָׁלוֹם.	26 The LORD lift up His countenance upon thee, and give thee peace.
כז  וְשָׂמוּ אֶת-שְׁמִי, עַל-בְּנֵי יִשְׂרָאֵל; וַאֲנִי, אֲבָרְכֵם.	27 So shall they put My name upon the children of Israel, and I will bless them.'

The blessings are threefold:

1.  May the Lord bless you and keep you - material well-being
2.  May the Lord's face shine upon you and grace you - inspiration
3.  May the Lord lift His face to you and grant you peace - fulfillment


First we pray for the basics -- let us not worry where our next meal is coming from.  Then, let us set our sights upon a worthy goal.  Finally, may we have the grace and uplift to fulfill on our goals, that we may have completeness (שָׁלוֹם is the root of both "peace" and "completeness").


כן יהי רצון

So may it be (G*d's) will.

Post-Mother's Day quote

This was quoted without attribution on another blog:

• To the mom who’s breastfeeding: Way to go! It really is an amazing gift to give your baby, for any amount of time that you can manage! You’re a good mom.
• To the mom who’s formula feeding: Isn’t science amazing? To think there was a time when a baby with a mother who couldn’t produce enough would suffer, but now? Better living through chemistry! You’re a good mom.
• To the cloth diapering mom: Fluffy bums are the cutest, and so friendly on the bank account. You’re a good mom.
• To the disposable diapering mom: Damn those things hold a lot, and it’s excellent to not worry about leakage and laundry! You’re a good mom.
• To the mom who stays home: I can imagine it isn’t easy doing what you do, but to spend those precious years with your babies must be amazing. You’re a good mom.
• To the mom who works: It’s wonderful that you’re sticking to your career, you’re a positive role model for your children in so many ways, it’s fantastic. You’re a good mom.
• To the mom who had to feed her kids from the drive thru all week because you’re too worn out to cook or go grocery shopping: You’re feeding your kids, and hey, I bet they aren’t complaining! Sometimes sanity can indeed be found in a red box with a big yellow M on it. You’re a good mom.
• To the mom who gave her kids a homecooked breakfast lunch and dinner for the past week: Excellent! Good nutrition is important, and they’re learning to enjoy healthy foods at an early age, a boon for the rest of their lives. You’re a good mom.
• To the mom with the kids who are sitting quietly and using their manners in the fancy restaurant: Kudos, it takes a lot to maintain order with children in a place where they can’t run around. You’re a good mom.
• To the mom with the toddler having a meltdown in the cereal aisle: they always seem to pick the most embarrassing places to lose their minds don’t they? We’ve all been through it. You’re a good mom.
• To the moms who judge other moms for ANY of the above? Glass houses, friend. Glass houses.

Buddy Walk By The Sea - Summer 2013!

I just signed our family up for this summer's Buddy Walk in Falmouth, MA on July 27, 2013.

Donate here for a good cause!

Missed my bloggiversary

It's been just over 1 year since I started this blog.   Besides the tabs at the top of the page, the most visited posts were:

http://matir-asurim.blogspot.com/2012/06/ethics-of-fathers-day-11.html about adoption corruption, through searches about Reece's Rainbow controversies.

http://matir-asurim.blogspot.com/2012/06/untreated-hydrocephalus.html through searches about hydrocephalus

and

http://matir-asurim.blogspot.com/2012/10/31-for-21-different-sn-adoption-story.html about a Chinese woman who takes in disabled children and takes care of them in her village with minimal resources.  Not sure  what the search that lands people there was.

I am really enjoying mixing up advocacy with general Jewish topics.  I love doing the Torah Connection, even when (like this week) I have a hard time figuring out what to say.  I think next year I will do a weekly feature on the Haftorah.

And tomorrow I finally get to present my proposals to the Tikkun Olam Group at my congregation.  Maybe we can actually put some action items for next year!  I would love to get representation at a Buddy Walk, sponsor some disability-related movie nights, and perhaps even a workshop.

What a year it has been!

OT: Making Challah

Daniel and I had our honeymoon in Sedona, Arizona in December 2004.  Our first Shabbat as a married couple we wanted to buy a challah and wine to celebrate in our resort.  We went to the local supermarket and found the bin in the bread aisle labeled "Challah" -- and it was empty!  We asked the staff, and were told that unfortunately, because it was Christmas Eve, the delivery truck had not brought the usual stock. But fear not, they will have more on Sunday!

Um, no.

So we wandered around the supermarket trying to figure an alternative.  In the frozen aisle we found frozen Italian bread dough -- in packages of three, no less!   So we got it, went back to the resort, braided the dough, and baked our first challah together.

When we came home, I was determined to learn to make challah right.  The first few tries I messed up the yeast -- the water temperature must be within a very narrow range for the yeast to puff up properly. With time, however, the results got more and more pleasing, and well worth the effort.  When my second child was in second grade, I made a demonstration of making the challah in her class, and I prepared the recipe for everyone to take home.  I have had some requests for this recipe, so here it is:

Making Challah

You will need:

A measuring cup

A small bowl

A large bowl

A baking dish (oil it first!)

Plastic wrap

Ingredients for one challah:

4 cups FLOUR

2 EGGS

¼ cup OIL

¼ cup HONEY

1 tablespoon SALT

1 teaspoon SUGAR

1 package ACTIVE DRY YEAST

1 cup WATER

STEPS:

1. Heat the WATER in the microwave for 18 seconds on HIGH.

2. Mix the WATER, SUGAR and YEAST in a small bowl.

3. Let the yeast mixture PUFF UP for 30 MINUTES or more.

4. In a big bowl, MIX 3 cups FLOUR with ONE EGG, OIL, HONEY, SALT and puffed up YEAST mixture. Add more flour a bit at a time so it’s not too sticky.

5. KNEAD the dough for 10 MINUTES or more.

6. WRAP the dough with PLASTIC WRAP

7. Let the dough RISE for 2-3 HOURS.

8. BRAID the dough into a Challah

9. COVER the dough with PLASTIC WRAP

10. Let the dough rise for 1 HOUR

11. Preheat oven to 375 DEGREES

12. Beat the YOLK (yellow part) of the second egg together with some water and SPREAD it on top of the Challah

13. BAKE the Challah for 30 MINUTES, or until the top is golden brown

14. ENJOY your Challah!

The meaning of Shavuot

Via aish.com.

Hosting programs

I have talked on this blog about helping abandoned/orphaned children through adoption or in-country programs.  There is another kind of program, though.  There are organizations which facilitate American families hosting an older orphan for a summer or a shorter vacation, after which the child returns to his/her country of origin.   This allows families to visualize integrating a foreign child into their lives without a long-term commitment.  It also allows the child to visualize what life in a family might be like, thereby ameliorating the transition once an adoptive family steps forward.  The child also gets to learn some English, as well as American culture.  Finally, the family is well-positioned to advocate for the child and answer questions that a potential adoptive family might have about him/her, thereby dramatically improving the chances for placement.

I have not previously written about these programs, though, because the vast majority of them are Christian-affiliated.  They will only place children in practicing Christian families, and proselytization of the children is an integral part of their mission (no pun intended).

An exception has just come to my attention though.  Project 143 is a non-religiously-affiliated hosting organization.  Applications are being processed right now for Summer 2013 hosting opportunities, or you can donate money to help sponsor children's airfare to meet their host families.

An interesting take on the history of "Down Syndrome"

Worth a read.

Almost Shavuot - A Mother's Day perspective

Shavuot tradition is the reading of the Book of Ruth.  The story begins with Elimelech, a man of the tribe of Judah and his wife Naomi, as the to to the land of Moab in search of food during a drought.  While there, the man and his two sons die, leaving Naomi and two daughters-in-law.   Naomi set about to return to Bethlehem, and instructed the young Moabite widows, Orpah and Ruth, to return to their families.  Neither wishes to leave their mother-in-law, but Orpah eventually relents and bids her farewell.  Ruth, on the other hand, refuses, and utters the sentence which is seen as the model for Jewish conversion:

טז  וַתֹּאמֶר רוּת אַל-תִּפְגְּעִי-בִי, לְעָזְבֵךְ לָשׁוּב מֵאַחֲרָיִךְ:  כִּי אֶל-אֲשֶׁר תֵּלְכִי אֵלֵךְ, וּבַאֲשֶׁר תָּלִינִי אָלִין--עַמֵּךְ עַמִּי, וֵאלֹהַיִךְ אֱלֹהָי.	16 And Ruth said: 'Entreat me not to leave thee, and to return from following after thee; for whither thou goest, I will go; and where thou lodgest, I will lodge; thy people shall be my people, and thy God my God;
יז  בַּאֲשֶׁר תָּמוּתִי אָמוּת, וְשָׁם אֶקָּבֵר; כֹּה יַעֲשֶׂה יְהוָה לִי, וְכֹה יוֹסִיף--כִּי הַמָּוֶת, יַפְרִיד בֵּינִי וּבֵינֵךְ.	17 where thou diest, will I die, and there will I be buried; the LORD do so to me, and more also, if aught but death part thee and me.'

(Ruth is also the model for a Jewish convert insofar as Naomi pushes her away several times before agreeing to take her back to Israel with her.  Unlike proselytizing religions, Judaism does not see conversion as a goal in itself.  The convert must initiate the process and pursue it in spite of opposition.)

At this point, Naomi relents:

יח  וַתֵּרֶא, כִּי-מִתְאַמֶּצֶת הִיא לָלֶכֶת אִתָּהּ; וַתֶּחְדַּל, לְדַבֵּר אֵלֶיהָ.

18 And when she saw that she was steadfastly minded to go with her, she left off speaking unto her.

The verb used, מִתְאַמֶּצֶת, shares a root with אֹמֶץ (courage), מַאֲמָץ (effort) and אִמוּץ (adoption).  Judaism places a great emphasis on the shared familial heritage (patriarchs and matriarchs), and in a real sense, all Jews are felt to be an extended family.  Conversion into Judaism, then, is a form of adoption into this family.  Where Christianity sees religious conversion (being "born-again") as a model for adoption, Judaism sees adoption as a model for conversion.  Judaism also recognizes the courage and effort that are intrinsic to this process.

The story of Ruth continues with her encounter with Boaz, a kinsman of Elimelech.  Again, we see the balance between his sense of family obligation, honor, and charity as Boaz facilitates Ruth and Naomi to glean in his fields without being harassed by the regular laborers.  Also, when Ruth entreats him to take her as a wife, he hesitates, pointing out that there is a "closer kinsman" who would take precedence to marry Elimelech's son's widow.  Only when this other man begs off does Boaz in fact marry Ruth, who then bears Obed, who will be the grandfather of King David.  Naomi helps take care of this child as her own, giving her comfort to ease the pain of her two lost sons.  Naomi the mother has come full circle.

Twice, then, we see keeping blood lines together as the "Plan A" -- Naomi urges Orpah and Ruth to return to their families, and Boaz seeks a "closer kinsman" as husband for Ruth.  It is recognized that adoption is not the ideal - the ideal would have been for the original families to have stayed together.  So much pain was caused for the individuals involved!  So much brokenness!

However, it is out of this brokenness - with much courage and effort - that the lineage of King David was established.

Torah Connection - Bamidbar

Now we start the 4th book of the Torah, Bamidbar (In the Wilderness/Desert), or as it is called in English, Numbers (alluding to the counting of the census).

The third triennial reading of Parshat Bamidbar begins with the same phrase as the beginning of the parsha:



God spoke to Moses in the Sinai Desert [and] said, 
Vayedaber Adonai el-Moshe bemidbar Sinai lemor.



There is a bit of a pun going on here.  Do you see it?

As I mentioned, Bamidbar means "in the desert".  However, the root of the word is the same as the word for speaking (medaber).    So one could translate the verse as "And G*d spoke to Moses in the Speaking of Sinai to say:"

I was wondering, with all the times that G*d spoke to Moses, how many times is it specified that he spoke to him in "Midbar Sinai"?  Well, thanks to Google I found that except for these two places, the only other place is in Numbers 9:1 (just 2 Parshas later), where the laws of Passover are given.  So we have this phrasing introducing the census of the tribes of Israel, a separate census of the Levites, and the laws of Passover.

What do the censuses have to do with the laws of Passover?  Note that we are almost at the holiday of Shavuot (The Feast of Weeks).  We count the 50 days from Passover to Shavuot in the count of the Omer. The counting of the days parallels the counting of the children of Israel in the desert.  And just as the counting of the Omer is divided into weeks, so the counting of the census was divided into tribes.

In fact, what is it that we celebrate on Shavuot?  It is the giving of the Torah - the Tablets of the Covenant - on Mount Sinai. In Hebrew the Ten Commandments are "Aseret HaDibrot" - The Ten Speakings - same root! Now we can read that same verse again, this time as "And G*d spoke to Moses in the Speakings of Sinai to say:"  In other words, the commandment to take the census was somehow within the Aseret HaDibrot = Midbar Sinai.  We know that the entire of people of Israel were present at Mount Sinai - men, women and children.  The census stands to affirm that each of them personally heard the Speakings and accepted his/her end of the Covenant.  Each individual counts!

Happy Shavuot!

Infinite Possibility

Read more about Karen Gaffney here.

This song is stuck in my head today

Hard work

One of my husband's hobbies is shooting. He enjoys target shooting at the range, though he never got into hunting. He is a strong believer in the importance of 2nd Amendment rights and individual responsibility for self defense. Philosophically I agree with him, though the hobby itself doesn't appeal to me much. He took me to the range a few times, and my reaction was basically "This is fun about like Angry Birds is fun. Line up the shot, let'er rip, and see how many pigs you knocked down...."  I don't play Angry Birds much, either.

He also reads many "gun blogs".  I figured I would understand my hubby better if I followed some of them.  Some of them don't do anything for me, being overly technical.  Others I relate to better, when they deal with  the philosophical/political/social issues at hand.  One of these is The Cornered Cat, written by a mom from a distinctly feminine - and maternal - perspective.  A recent post, titled Hard Work, however, went further.  It seemed to connect in a strange way to some of the themes of my blog here.  Go ahead and read her post.  Then come back here.

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OK?  Now I will take some poetic license and re-write Kathy's post with a few, um, substitutions (in italics)....


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Learning to effectively parent an adopted child with special needs is hard work, and don’t let anyone tell you otherwise. Although anyone can learn to do the paperwork and basic care, there’s a lot more to this discipline than simply being able to keep the child alive.

First, there’s the process of getting the knowledge you need about the legal aspects of special education, therapies, and attachment. None of this stuff is intuitive. The rules for adoption and schooling are different in different jurisdictions, and those rules change all too often. The rules for caring for the child at home tend to be more stable, but that does not make them either simple or intuitive. Getting a good, basic handle on those legal questions takes some effort and some skull sweat.

Then there’s the emotional hard work of sorting out your own beliefs about adoption and disabilities. When do you think it is right to bring another living, breathing, feeling, thinking human being into your home? When is it absolutely wrong? Those are the easy questions. Here’s the hard one: Am I myself able to take the child in if that is what it takes for him/her to thrive? Under what circumstances am I willing to do that? Am I willing to do it if it is a child of a drug-addicted teenager who likely has Fetal Alcohol Syndrome and other congenital defects due to prenatal drug use? Am I willing to do it if it is someone with physical or developmental disabilities? Am I absolutely sure I want to go down that road? Am I able to face those choices without flinching or freezing?

After dealing with the legal and emotional/ethical questions, we come to the social issues. What will my mother say about my decision to adopt a special needs child, when she finds out? How will my friends react, when they find out? Am I willing to deal with the social fallout if my children’s friends’ parents learn that we have a child with disabilities? Thinking through those questions may seem trivial to some people, but many of us have a very difficult time coming to grips with those social concerns.

Then there’s the question of child behavior and psychology. Adopted children struggle with attachment in some predictable ways, but it’s emotionally draining to learn about how RAD happens so we’re better able to avoid it. We do it anyway, because that knowledge helps us and our children stay safe.  We must study how violent meltdowns happen and learn how survivors have defended themselves. Along with that, we must begin training ourselves to notice the things going on around us so we can learn how to avoid dangerous situations before they develop. That’s hard work, too.

All of that pales when we think about the sheer physical effort it takes to master the day-to-day needs of a child with disabilities. Again, anyone can handle feeding and changing a young child. But acquiring the skill to handle the child with confidence, understand how he/she works, understand how to keep him/her on-track even if something goes wrong – that’s hard. Getting to the point where we can handle the child with the same casual confidence we feel in parenting our typical, biological children – that’s hard. Learning to be patient and loving every time, regardless of time or stress constraints – that’s hard. Learning to teach the child with smooth efficiency, building the good safe habits that will see you through a tough time – that’s hard. Learning how to use cover or concealment while disciplining a child in public, learning how to move while maintaining routines, learning how to reliably do what needs to be done even if you don’t have much time, even if your vision is compromised because your glasses got knocked off – that’s hard.

After we’ve learned those physical skills, we need to maintain them. That’s also hard. Finding the time to sleep isn’t easy, and finding a competent babysitter can be very challenging indeed. Sitting on the floor at PT/OT/ST for hours while we develop the skills under the tutoring of a qualified instructor is hard enough, but having the personal discipline to force ourselves to practice the un-fun stuff as much as we practice the fun stuff when there’s no one standing there encouraging us to try it anyway – that’s hard.

Sometimes I talk to people who feel stupid because they don’t understand all of this intuitively, or because they can’t just pick up a child and care for him/her as effectively as the magical people do on TV, or because they have to struggle to master fundamental child handling skills. If you’re in that boat, please let me give you a ray of hope here: you’re normal. It’s actually normal to find this stuff hard work. It does not mean there’s something wrong with you. It simply means you are doing the work it takes to learn something challenging.

We do that work because it’s worth it. Being prepared to rescue children is worth it. Being able to protect and love children? Worth it! Having the confidence and love that makes a child's life of abandonment and neglect head the other direction – totally worth it.  Life is precious, and a child's life is worth defending.

Pre-Mother's Day Musings

The best line in this article was, "Did you know you were having him?"

This was a particularly rude shorthand for "Did you get prenatally tested so you could abort if you knew he was going to have Down syndrome?"  Which of course, is also rude.

The author mom says,

“No,” I wanted to snap at her. “It was the darndest thing. I couldn’t figure out why I was getting so fat!” Or maybe just, “Did you know you were having your son?” 

Sarcasm aside, that is actually right on the money.  We never know what challenges our children will present.  Medically, socially, academically?  How many parents are really and truly prepared for the normal challenges of a typical childhood?  

Shrek IV

My boys loooove the Shrek movies these days.  They are pretty good movies, too! Great message about looking beyond superficial appearances, about friendship and love, and so on.

I recently saw the fourth movie with them, Shrek Forever After.  The movie hinges on two decisions made in order to make problems disappear.  The two problems are worded slightly differently, but in both cases the perennial trickster Rumplestiltskin fulfills them by making the people themselves disappear, cease to exist.

There are a few different ways to interpret this.  One is the importance of each individual, our inter-connectedness and interdependence.  The other is the wrongness of solving problems by "disappearing" them.   I am reminded of the discussion at the end of "Brave New World":

"But in civilized countries," said the Controller, "...there aren't any flies or mosquitoes to sting you. We got rid of them all centuries ago."

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 of 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."

In my mind, this speaks also to the modern idea of "abolishing" genetic disorders such as Down syndrome by prenatal diagnosis and abortion.   Can we do it? Yes.  If done early enough in the pregnancy, all but the most die-hard right-to-lifers would accept that it is the mother's prerogative to decide whether or not to continue the pregnancy at that point, for whatever reason.  But the long-term consequence of the sum of these decisions would be to leave our society without the rich diversity of individuals, as well as to deprive our families and communities of the growth opportunity inherent in learning to accept and celebrate these differences.  In the context of Brave New World, we are neither willing to "suffer" the disabilities by learning to accept people with disabilities as they are, nor to "oppose" them by seeking new medical treatments and educational methods to improve their outcomes.  Instead, we just make the individuals themselves disappear -- cease to exist.

Ironically, even as we embark on informal eugenics to eliminate Down syndrome, other medical issues are becoming more common.  For example, diabetes used to claim many lives before adulthood.  These days, diabetics are able to live normal lives, including having children.  Thus, they propagate the propensity for diabetes to future generations at a much higher rate than in the past.  And in fact, diabetes is far more common today than a century ago.


Do we want to "disappear" our problems, or do we want to confront them, solve them, and learn from them?

A metaphor

Somewhat related to yesterday's post, I just saw this:




Apply this to... pretty much anything you want to accomplish that requires a significant effort and commitment....?

Irony

The following facts about Down syndrome adoption:

1. There is a long waiting list for infant adoption of a baby with Down syndrome.

2. Most families adopting older children with Down syndrome already have a biological child with Down syndrome.  This means that families who are not dealing with all the extra challenges of Down syndrome are resistant to taking it on, while the families who know how hard it can be first hand are not daunted by it.

On the one hand, this is not ironic at all:  The unknown is scary, while a struggle we have already contended with is just "stuff to do".  The same phenomenon is apparent in most areas of human endeavor: Standardized exams, sporting events, presentations, and childbirth are all less terrifying the second (and third, and so on) time around.

On the other hand, those are all things which are generally seen as positives.  At least, the positive aspects of them are readily acknowledged by society at large.  Raising a child with special needs, however, is seen as an overall negative.  Sufficiently so, that #1 above notwithstanding, the overwhelming majority of women who get a prenatal diagnosis of Down syndrome choose to terminate the pregnancy.  Likewise, most families who get a post-natal diagnosis of Down syndrome go through a grieving period for their lost expectations.

Because raising children with special needs is seen as an overall negative, families who have typical children see no reason to seek them out.  The more or less unspoken idea is that "it's not our problem (thank G*d!) so let someone else deal with it".   Well, if the families with typical children won't adopt children with disabilities, then the other choices are families WITH such children or childless families.  The message is either,

"Families who already have this horrible misfortune can take on an extra helping."

or

"Families who are truly desperate for a child will be willing to settle for an imperfect child."

Neither of these messages is particularly, um, nice....  Furthermore, if you start from the premise that caring for these children is a "burden", then we should neither "dump" this burden on those who are, by this definition, burdened already, nor on those who lack the experience to handle it.   I mean, would we do this in a school setting?  Would we assign "difficult" students to a teacher who already has multiple challenges in her classroom?  Would we rather place them with a novice? Of course not!   But for the 24/7 task of parenting an ostensibly difficult child we are OK with these options...?

Aging out!

Here is a boy who looks no bigger than my 4-year-old:

No, he is not aging out of a baby house.  He will be turning 16 years old in June!  Can you imagine?  According to US immigration laws, once he turns 16 he may not be adopted by an American family.  Of course, the chances of him being adopted domestically in Ukraine are slim to none.  Most likely he will remain in the mental institution until he dies, which will probably happen all too soon, and he will be buried on the overgrown hillside in an unmarked grave.

You can see his institution in this video:


He has Cerebral Palsy and seborrheic dermatitis, but his greatest problem is clearly malnutrition and the lack of a family. He has significant delays, as could be expected, but he is a happy, smiley boy:

He does not walk or stand, and can't even use a spoon.  Is there a family out there who can help him?

Documentary project

There are many videos online of children and adults with Down syndrome.  There are many videos chronicling adoption journeys, as well as documenting deplorable conditions in orphanages.  I would like - at some point - to compile a documentary that follows a child from the orphanage, through the adoption process, integration with other siblings and progress over several years post-adoption.  I'd like it to be combined with interviews with the parents and siblings -- what went well, what was hard, what would they have done differently, and so on.  Here is a short clip that was featured on CBS last year that does the interview part, with a few glimpses into the kids' lives:




Too many of the resources online sugar-coat the difficulties, making them less than helpful.  In order to successfully make a difference, people need to be adequately prepared.  People who go in with unrealistic expectations are more likely to give up when the going gets a bit rough.