A slightly different metaphor

I realized in retrospect, that the metaphor of the burning building is not exactly the way I feel about special needs adoption, and I was reminded of a metaphor I thought about a month or 2 ago.

Rather than in a burning building, I see the abandoned, neglected, malnourished disabled children trapped in orphanages as drowning in a lake.

What is the difference?

Running into a burning building is dangerous, even for trained firefighters.  Specialized equipment is required to insulate against the extreme heat, and there is always the risk of the structure itself falling on top of you.  If special needs adoption involved that level of danger, it would make sense to say no.

However, as I learned more about the families who had blogged about their experiences, I realized that this is not anything like a burning building!  Most people can swim reasonably well.  Most people can swim even while carrying a small child.  Swimming does not take specialized equipment or extensive training.  Most people don't want to jump in a cold lake and swim in their clothes, but would do so - and deal with the slight discomfort - if the life of a child depended on it.  Some people cannot swim, and some people may have conditions which make swimming under those conditions a really bad idea.  But for most people, that is not the case.    Everything else in my previous post would still apply:  Someone needs to call 9-1-1.  Some people need to bring warm blankets and perform CPR on the rescued children.  But we don't really need to wait for a team of Olympic swimmers or lifeguards to jump in and do the rescuing.  Some of the drowning children are "heavier" and need a stronger swimmer to come out for them.  But most are not.  They just need someone to put their own discomfort aside and take the plunge.

Sukkot and Special Needs

We have just completed the cathartic process of atonement, which some say began at the beginning of the month of Elul (a month before Rosh Hashanah), and some even begin earlier, on Tish'a B'Av.  According to the Jewish calendar, the next holiday is already upon us just 4 days later.  This is the fall harvest holiday, Sukkot (Feast of Tabernacles).  Quickly, we must put up the transient shelter symbolizing the tents of the Hebrews during the Exodus.  We collect branches for the ephemeral roof, and coach our children in the making of paper chains for decoration. 

We make do with the barest of shelters, and we celebrate the abundance of divine provision.

We build a tiny hut, and we invite guests to join us and crowd in every day for a week.

What an appropriate metaphor for recognizing the value in every individual, no matter how inadequate they seem!  Here is this grossly deficient structure, which utterly fails to protect us from the elements, and we choose it specifically to celebrate, not only with our own family, but to share with others, flaunting it, glorifying in it!  The Sukkah has a value beyond its exterior form. So, too, we are challenged to see people with disabilities, not by the external limitations of their physical form, but by the spiritual meaning of their humanity.

Just in case we fail to take in this message, tradition hits us over the head with it.

One of the main observances of the holiday is the taking of  "The 4 Species" a.k.a. "Lulav and Etrog". These are a citron, a date palm frond, a willow twig and a myrtle bough.

They are held together and shaken up, down, and to the 4 compass points, demonstrating the everpresence of G*d. There are many interpretations of the symbolism of these plants, but the most common is this:

Perhaps the best known is that there are four types of Jews: the etrog, which possesses both taste and fragrance symbolizes those who possess both learning and good deeds. The palm branches possess taste but no fragrance, symbolizing those who possess learning but do not perform good deeds. The myrtle is the inverse of the palm, possessing no taste but having a pleasant fragrance; this is likened to those who are not learned but do good deeds. Finally, the willow has neither taste nor fragrance, symbolizing those who possess neither learning nor good deeds. We, of course, wish to be the etrog, possessing both learning and good deeds. But the reality of life is that our communities are made of all four types of people and because community is such a high priority in Judaism, we bind all four species together, as we ought to bring together all Jews in one community.

In other words, the worth of a person is not defined by their intellectual ability (learning) nor by their physical ability (good deeds).  We are commanded to bring all people in our community together, in our frail symbol of abundance, and point to all directions, showing that our relationship to G*d is not limited by the external manifestation of our physical bodies or material circumstances.

Chag Same'ach!  (Happy holiday!)

A metaphor

I followed a link from Susanna Musser's blog today, and found this metaphor for the predicament of special-needs children trapped in institutions:

Imagine...You are walking along a street and see that a house is on fire. There are flames pouring out every where! Hot flames...smoke pouring out of every crack and window. You get as close as you can to see if there is someone in the house - only to see the house is FULL of children. Children whose cries you cannot hear -but you just see each of their little faces as the flames are creeping closer, burning holes in their clothing and choking their every breath. You are horrified beyond your wildest nightmares. You start shouting for help to all those passing by. "Help me save these children! Help me get this one, and this one, and this one!'

But to your amazement, people glance at you and walk away. Others say, "I am not equipped to fight fires, I am so sorry. Good luck. I support your efforts." Others wring their hands for a few moments, then say, "There are too many of them. What good will saving one do? It is only one of hundreds. Why try?" Even others say, "Why put your life at risk? Why change your day to help them? What of your own family? They are your responsibility, not these ones." One even had the nerve to say, "God wants to give you good gifts, He wants you happy - this will make your day hard. I can't imagine He would expect you to do this."

Finally, you see a few people running into the house. To your relief, these people are grabbing as many children as they can. They run them out to the arms of the rescuer's family and race back into to grab as many as they can carry. 

 This blogger goes on to bemoan the lack of community support after she has gone in to save a child:

They say that they could understand you feeling like you needed to save one -as they glance cautiously at the little one that you just risked your life for....that you were willing to GIVE your life for......but they really can't understand why you would go for another. Haven't you sacrificed enough? Some are even saying that you are selfish! They are saying that when you race into that house, it makes them uncomfortable. It distracts them from the things that they have to think about that day. You try to reason with them, but their faces are full of pity for you! Pity that you have obviously lost all common sense.

I am definitely meeting all of these attitudes as I try to make an impact in this area in my community.  I think that those are normal reactions people have.  A fire IS scary.  Most people DON'T want to run into the blaze to rescue the children.  And being concerned for one's pre-existing obligations is valid.

That's where the community project comes in.  This is not about individual heroism by itself -- it is about creating an environment where the individual heroism is scaffolded by structures and supports so that these fears and concerns are abated.  In fact, what do most people do in a real fire?  They call 9-1-1.  They bring in fire trucks to put out the fire and ambulances to provide emergency care to the children as they are brought out.  They may bring jugs of water or other supplies as needed to set up emergency triage points.  Somebody still needs to run in and do the rescuing, but in the context of a shared effort, not an individual act of heroism which, no matter how sincere, can act as a shaming to those who do not undertake it.

Matir Asurim will make the 911 call -- raising awareness, both of the dire conditions the children are in, and of the potential of children with special needs when they are raised in loving families with access to medical care and educational and social opportunities.
Matir Asurim will bring the fire trucks -- participating in in-country efforts to improve conditions in orphanages
Matir Asurim will bring the ambulances -- participating in charities and other organizations which bring life-saving medical care to children both in the orphanages and post-adoption
Matir Asurim will bring jugs of water -- support adopters in caring for children with special needs who are recovering from the effects of years of institutionalization.  This would include both logistical and material help, as well as emotional and spiritual support.

My vision for Matir Asurim is that rather than requiring the heroic few to run in repeatedly until all are saved, whatever the cost, that more and more resources from the community will be brought in, so that saving a child is seen as a normal thing to do.

Now that is a "new normal" to aspire to!

At-ONE-ment

This evening begins the fast of Yom Kippur -- the Jewish Day of Atonement.  For Christians, atonement is connected to identification with the sacrifice of Jesus.  For Jews, atonement is a process of realignment with both G*d and our fellow man.  In fact, the first step of atonement is asking forgiveness from other people whom we have hurt in the past year.  Only then can we ask forgiveness of G*d for our transgressions against religious rules.

The fast will continue after this evening's services (called Kol Nidrei -- "All Vows") until tomorrow evening after the Ne'ila ("Locking") service.  During this time, the Shofar (ram's horn) will be sounded numerous times.  What does all this mean?  How does all this fasting and praying achieve atonement for failing to keep ritual or ethical commandments?

Atonement is a process of identification or alignment. We become ONE with G*d and our fellow man.  When we are all hungry and praying together, we can recognize that others in the world suffer in hunger every day.  We listen to the words of Isaiah, who exhorted the Jews of his time to take the meaning of the day to heart -- not merely to fast while turning a blind eye to those who are hungry due to circumstance, not choice. 

We also seek to see the Oneness in both G*d and humanity.   With respect to G*d, we need to see that the rules we have transgressed are there to help us live a better life, not to make our life more difficult.  In this we are like children, who rebel against parental rules that aim to teach them good habits for a lifetime. 

This year, let us at-ONE with the One, and with everyone.

Gmar Khatima Tova!  (May you be inscribed for good in the Book of Life)

G*d Save the Queen!

Is this


becoming


a trend?

Brookline Day - Fun!

What a gorgeous day we had!  Lots of bright sunshine, not too hot, just a bit too windy, so I had to work a little harder to set up the table.... and forgot to take a picture!  I was thinking about it, and kept putting it off.

Had a great time talking with lots of people -- several people signed up, and my whole stack of flyers was used up -- I think I had 2 left over when I was done!   The guy from the local Rotary Club was interested in having me come and talk to them, too.  Each opportunity creates a new one!

I had a bit of interest in my tutoring services, too.  Several kids attempted the puzzle that I set up on my table.  Can you solve it?

My darling husband came by with the cutest, smartest little boys in the whole world and brought me lunch.

I'm exhausted!

Brookline Day!

This Sunday, September 23, 2012, will be Brookline Day -- an opportunity to share my enterprises with the community.  I got a booth, and I will be splitting it between my private math tutoring business and the Matir Asurim initiative.  I am looking forward to talking with lots of people from my town and surrounding area, maybe network for some speaking opportunities? Maybe talk with local press? Hopefully get lots of people to sign up to be involved.  Definitely raise awareness!  Hopefully get some new students, too!  Should be a lot of fun.  If you live in the Boston area, stop by and say hi!  I will be in booth #44.

Massachusetts Down Syndrome Buddy Walk 2012!

The potential of people with Down syndrome has increased tremendously in recent years.  What used to be a dead end in most cases just 50 years ago, is now just an extra challenge with incredible rewards.  Children with Down syndrome are a joy to their families and all who know them.  Medical advances, early intervention, and increased inclusion and awareness has made it possible for them to expect normal lives, including college, gainful employment, marriage, and full participation in the community.

My family will be participating in the Down Syndrome Buddy Walk on October 7!  I am so excited!

Please donate here to support Down Syndrome awareness!

A tale of two Levites

According to the Bible, Levi was the third son of the patriarch Jacob, born of his wife Leah. He was the progenitor of the tribe of Levi, which was assigned the task of taking care of the Temple and tending to the priesthood.  The priests were the descendents of the Levite Aaron, the brother of Moses.  Even after the destruction of the Temple in 70 C.E., people kept track of membership in the Levite and Priestly classes, and they were given special roles in synagogue life, just as many synagogue rituals were created to mirror the original Temple rituals.  The identifiers are passed from father to son. For example, I know that my father is a Kohen (Priestly lineage), while my maternal grandfather was a Levite.  My husband, however, is neither.

This story is about two little girls with Down syndrome, who coincidentally are both born into Levite families.  The first is Kalanit Levy, born in Oregon in 2007.  The other is Rachel Emuna Levin, born in Jerusalem perhaps a year later.

Kalanit was the subject of a groundbreaking legal case.  Her parents sued the obstetrical center for "wrongful birth", arguing that the center had run their prenatal tests incorrectly, and had they known that the baby had Down syndrome, they would have aborted her. The parents say that they love her dearly, and simply wanted to make sure that they had the finances to give her the resources her condition would require. The case was decided in March 2012, just a few months before Kalanit's 5th birthday, and the parents were awarded $2.9 million.  I hope this will cover the psychiatric bill when Kalanit wants to know why her parents wanted to kill her.  Or when Kalanit's brothers wonder the same thing.

Rachel, on the other hand, is the subject of a groundbreaking approach to teaching children with Down syndrome.  Her parents did not do any prenatal testing, and were shocked to learn that she had the disorder.  They took it as a sign that they had a special responsibility to this child, and this sign was confirmed for them when they discovered the Feuerstein Center, located just a few minutes away from their home.  Enjoy!

Another awesome kid with Ds

Here is a story from April, about a boy who did not let Down syndrome get in his way of becoming an Eagle Scout:

Shana Tova!

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

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

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

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

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

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

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

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

============

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

 

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

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

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

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

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




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

(Almost) A New Year

This morning I prayed the Amidah, and an incredible feeling came over me.

I got to the Blessing of the Year:


Bless for us, L-rd our G‑d, this year and all the varieties of its produce for good; and bestow (During the summer season say:) blessing (During the winter season say: dew and rain for blessing) upon the face of the earth. Satisfy us from Your bounty and bless our year like other good years, for blessing; for You are a generous G‑d who bestows goodness and blesses the years. Blessed are You L-rd, who blesses the years.


You see, the Jewish year 5772 ends today at sundown, when the shofar sounds during the evening Rosh Hashanah service that the Gates of Heaven open up for the High Holy Days.  Only a few hours left of "this year".  And yet, let us bless this year -- even now -- let us welcome the bounty and blessing that can come even in these next few hours.  Even as this year fades, let us be open to all the varieties of its produce as they are bestowed upon us by our generous G*d.

Shanah Tovah!

Fear - a story

Back in June, we were working our way through many of the fears of the unknown in international special needs adoption.  Sure, there are so many amazing stories of miracles unfolding when children come into families after years of neglect in orphanages and institutions.  But what if something goes wrong?  Many people I spoke with about this told me about people who had adopted internationally only to discover that their children had problems which had not been disclosed.

A few weeks ago I read this post, and frankly, it scared me!  Will this family disrupt the adoption?  Will this prove too much for them to handle?  Please read it.  It really goes to the heart of the fears around adoption.


Did you read it?  Are you afraid yet?

A few days ago, the family finally posted an update.  Please read it.


I don't want to excerpt either one of these posts, I think they need to stand in their entirety.  They show the raw fear, the real difficulties, the extra work, the struggles with attachment, without any sugarcoating.  And yet, the miracle is still there: the healing, the joy, and the love.

Off-Topic: Barbershop

Just wanted to acknowledge my amazing husband, who was the driving force that made this event happen last night.  What was just an idea a year ago became a reality on stage.  They were awesome!  The program was totally crisp, they rocked the house, and my little boys ALMOST made it through the whole thing without a meltdown.....  The 2-year-old decided he had enough right in the middle of the special guest quartet singing "Empty Chairs and Empty Tables" from Les Mis.  Ugh.  I hope nobody noticed......

Teen with Down syndrome on Honor Roll and football team

This story is almost a year old, but this amazing boy lives only an hour away from me!

Down syndrome Learning Program Boston

Today was exciting!  It was the first session of the Learning Program that I started volunteering at last year.  There were 2 class periods, with 2 class periods with 2 simultaneous groups meeting at each time.  The first group I helped with was the oldest children (mostly 10-11 years old), several of which were featured in the promotional video produced a couple of years ago:



These children remembered me from last year, and showed great competence.  Most of them could talk with clear diction, follow directions, and showed great enthusiasm to participate in the familiar routine.  In fact, one of the recurrent admonitions to that group was "Leave the teacher tasks to the teachers!" as several kids were eager to instruct others in proper behavior.....

After a short break, the next shift began.  Now I was assigned to the youngest group, mostly brand-new 4-6 years old.  Adorable!  A couple of the children in this group were repeating it from last year, and they recognized me.  They were eager to get in my lap, a refuge from the crowd of new faces.   At least half of them were still in diapers, and several had ankle braces peeking out from their little sneakers. Still, it was a large group, and most of them adjusted to the routine of the class remarkably well, and had fun, too!

I just adore these kids!

TREATED Hydrocephalus

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

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

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



and Adam




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



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

Fall is in the air

I can't believe I haven't written all week.  It has been a busy week, on all fronts.  First full week of school for the bigs, first week of home-preschooling for the littles, musical event this weekend that my husband has been working towards (organizing and practicing) for over a year, big issues on the world stage, and construction workers replacing the roof on our house.

And tomorrow evening is Rosh Hashana (Jewish New Year).  Time to clean out the sins of the past  year, turn over a new leaf.  So many things I want to accomplish this year!

I actually have alot of on-topic ideas that I have been meaning to write about, and just haven't had a chance to sit down and do it.  Stay tuned!

Even in the best cases....

I have written a lot about what happens to children with severe cognitive or physical disabilities in the orphanages and institutions of Eastern Europe (and elsewhere).  How children who are deemed unworthy are left to waste away in cribs. 

But what about children who have only mild or no disability?  Or who have been abandoned to orphanages due to poverty?  How do they fare as wards of the state?

Renee and her husband have just completed the adoption of 3 children from Ukraine, less than a year after adopting a little girl with Cerebral Palsy.  Two of the children were adopted out of the "Baby House", but the third had already been transferred to the older child orphanage.  This is not a mental institution.  The children go to some kind of school, get to play outside, and develop basic competencies. 

But it is NOT a good place.

PLEASE READ this account of what Renee learned about her son's experiences in the few months after transfer once she brought him home (and took him straight to the Children's Hospital....). 

Remembering

Where were you on 9/11/01?

How did it affect your life, who you are, and how you view the world?

Awareness

I have a soft spot for children with Down syndrome.  I entered the world of special needs when I started researching Ds.   As a woman going through pregnancy and childbirth after age 40, I had to consider what I would do if I got that diagnosis.  I realized not only that I would welcome that child no matter what, but that Down syndrome is far from the horrible fate that "common knowledge" would have you believe.  There is a good reason for that.  Medical progress has effected huge gains in both longevity and quality of life for people with Down syndrome.  Back in the 60's, when children with Ds were routinely institutionalized with little or no medical care, their life expectancy was in the teens -- much as it is in Eastern European institutions today.  In the 70's these institutions were gradually phased out, as advocacy for people with disabilities gained ground in public policy in this country.  By the time I was a teenager in the 80's, a child born with Ds could expect to live into the 20's.   Today, the same child could expect to live to 50 or 60 years old.  He or she has the potential to graduate high school, hold a job, get married, and be a full member of society.  But most people's opinion of Down syndrome was formed based on information that is outdated and getting more so every day.  The fact that prenatal testing encourages many pregnant women to abort their babies with Down syndrome means that we have fewer people among us who can dispel this misinformation.  And so it goes.

This week several people blogged about another special need where people's knowledge seems stuck in the 80's.  Back in the 80's, HIV was a big, scary deal.  If you had it, it would probably develop into AIDS, and your prognosis was very poor, indeed.  Then, in the 90's, anti-retroviral drugs were developed, and as those became cheaper and more widespread, we stopped hearing about HIV in the news.  It was just not a big deal anymore, unless you lived the kind of lifestyle where you were not likely to avail yourself of medical help (e.g. drugs and prostitution).  Since these drugs became available, children who had been infected either through birth or through blood transfusions were able to lead completely normal lives.  Since the 1990's, there have been NO cases of HIV transmission within families, or through schools and other casual interactions.  The drugs are covered by most insurance policies, and copays are manageable.

In Eastern Europe, however, HIV infection rates are growing rapidly, as awareness of risky behaviors has not kept pace with the USA.   Infected children form a sizeable population in the orphanages.  While they are wards of the state, they generally do get access to the needed medication.  When they age out at about 16 years old, however, they often find themselves on the street, and the cycle repeats.  Adopting children with HIV is very manageable!  Except for the medication and the occasional extra check-up, they can look forward to everything that any other child does, and their future has limitless possibilities.

What's in it for me?

I have been talking a lot about the moral basis for special-needs adoption and how it may be grounded in a non-religious ethical context.  However, one of the major hurdles for both religious and secular potential adopters is the notion that this is fundamentally an "extreme", "dramatic", "altruistic" project.  A religious context can create a framework where people are motivated to take on such things for a higher purpose.  Secular contexts can do so, as well, though generally to a lesser extent.  However, both religious and secular people are motivated, more than anything else, by the selfish motive -- "What's in it for me?"

When I first found out about the conditions of special-needs orphans in developing countries, and read the stories of families which adopted them, I had many of these same reactions.  "Wow," I thought.  "These people are really amazing and self-sacrificing!"  Then I kept reading, however, and a new pattern emerged.  Very consistently, the parents reported great joy in the miraculous progress their adopted children were having, and in the beauty that the children were, in spite of their disabilities.

These, however, were parents.  They were highly invested in this enterprise, so surely they were biased.  The clincher came when I started reading reports by siblings of the adoptees.  After all, siblings are not the ones who made these decisions, but they live with the outcome.  What do they have to say about it all?


This 12-year-old girl has 2 little brothers.

Last year, her parents adopted 2 more little boys, both with Down syndrome.  Right now they are adopting a third boy with Down syndrome from the same orphanage! Read her blog to see how she feels about adoption.

Here is another 12-year-old sister of an adoptee with Down syndrome,

 answering readers' questions on her mother's blog.


Here are some more comments from the same family, including the 2 oldest brothers, aged 16 and 18.

And another family with 3 typical biological children, and 4 adopted children with special needs, 2 with Down syndrome.

Well, maybe these are just self-selecting anecdotes, right?  The people with negative experiences wouldn't post about it, right?  I actually googled on-line quite extensively looking for stories of siblings who wished their parents never had/adopted their sibling with special needs.  I couldn't find any!  Some stories of occasional frustration or sibling rivalry -- like any other siblings.  Many stories of parents worrying about the siblings' reactions!  But nothing that stood out as actual regret because of the sibling's special needs.

Here is a cool blogger with 2 biological children with special needs, a girl with cerebral palsy and a boy with Down syndrome.  She cites this study done by physicians at Children's Hospital Boston on the impact of children with Down syndrome on their typical siblings.


How anyone can read these stories -- and many, many others like them -- and not think "I want this for MY family, too!" is beyond me, no matter what your religious beliefs.

More on Secular Humanism

 A thoughtful reader offered the following comments:

==========================

I think that most of my friends who are secular / atheist are committed to creating a world in which children like these are protected and cared for, by supporting economic development, fair practices, working to end poverty.

I admit that this work is more broad than taking the dramatic action of personally adopting a severely disabled child. That does not mean that their contribution to society is less valuable.

Working as a doctor who provides primary care in a suburb is also less dramatic than working as a doctor in a war zone. But suburban children need doctors too. Both are moral choices. We cannot know the ultimate reward for either choice.

I absolutely agree!  That is why I think that that kind of work must be a part of the effort.



Religion, like any ideology, is a powerful force. It can be used for good or for evil. It can motivate people to take great moral action or it can encourage people to be small, selfish, petty and judgmental. Many people use religion in both ways simultaneously -- great generosity towards others like them and great hatred of those who differ, even slightly.

I think this is true about human nature in general.  Yes, religion is a tool, like fire, or a knife, which can be used to create or to destroy.  Obviously, in trying to apply this tool to the purpose at hand, I am not condoning the abuse of the tool.  Also, the purpose of this thread is to figure out alternative strategies for those who are not comfortable wielding this particular tool.

In light of those extremes, is there really something wrong with a rational philosophy of "enjoy life, be kind to others, do no harm"? Should we prefer great good and great evil or a more balanced approach?



Sorry, but I think that this is a false dichotomy.  Of course there is nothing wrong with generic benevolence.  At the same time, I think that it is worthwhile to encourage ourselves and others to go beyond that to whatever extent is appropriate.  I don't believe that this is a zero-sum proposition -- that any good action is inevitably met with an equal and opposite (bad) action.

As Jews, we are *not* commanded to take extreme actions to support others. Give first to your own family, then to your community, then to your city, then to the world. Those who exceed this are noteworthy and admirable, but it is not the standard by which everyone is judged.

An ideal Jewish society, IMHO, is not one in which every individual person adopts one of these children. It is one in which every single one of these children receives compassionate, loving, appropriate care in their family of origin.


 True.  Where I think that the present initiative is appropriate is that the notion of "our community" has become in many ways global.  The world is far more interconnected than it once was.  We are in fact challenged to address needs that would not have made it on the radar in Biblical times.

An ideal society does not have superhuman men and women engaged in amazing feats of compassion.

Why not?  They need not be the majority, but I think that we absolutely do need "everyday heroes" that inspire us all to be our best selves.

 It is one in which public institutions and policies are guided by compassion such that every family with such a child receives the support they need.


Absolutely!  Again, I think that social action in-country is a very important component of the work.  However, I think that adoption serves 2 purposes in this.  First, it rescues the kids that are in dire straits right now, before waiting for the social change to take place.  Second, by demonstrating to society that those children are in fact wanted and valued, these adoptions can catalyze the change in attitudes that we want to bring about.


While you may find few atheists / secularists adopting special needs children, you will find many atheists looking for ways to make people's lives better through science, engineering or public policy. Engineers design wheelchairs and scientists discover new drugs and treatments. One change to a state regulation could mean the difference between a child whose parents can keep them at home and a child who is institutionalized.

These contributions are significant. They are moral actions to help better our world. Do not dismiss them because you prefer dramatic action at the individual level. Both kinds of action are needed to create tikkun olam.

I agree completely!

The Project

 Mia Farrow once said, "If you have a child is drowning in a lake, do you have a moral obligation to pull the child out? Well, almost everybody would say yes. But what if the lake is a mile away? What if it's a continent away?"

Most people don't really think about children with special needs who are unlucky enough to be born in countries where treatment and therapy are not available to them. Other people see videos like this and this and are inspired to adopt a special-needs orphan who would otherwise be sentenced to a short life in a mental institution with no hope for a real future.  Some people are even motivated to adopt multiple children, feeling that the need is so great that they want to do as much as they can.

I believe that I can actually have a greater impact if instead of trying to save as many as possible myself, if I raise awareness and inspire people in as many communities as possible to adopt just 1 or 2 children each.  This can actually be more effective in the long run, since people can look at a family that adopts 1 or 2 children with special needs and see themselves doing the same, while a family that adopts many children is just so far off the bell curve that most people in the larger community would not be able to identify with them. 

This, then, is the plan: 

Matir Asurim Action Plan

Mission: To save the lives of children born with special needs

We all know children with special needs. Children with a wide range of disabilities are fully integrated into our schools, and are regularly portrayed in movies and television.

This is not the case in most of the world. In many countries, children born with special needs are relinquished to the care of orphanages and institutions, often at the advice of doctors. There they are not only deprived of social and educational opportunities, but often neglected and malnourished to the point that they rarely survive past adolescence.

What can we do?

Matir Asurim (“releasing the captives”) seeks to address this in 2 ways:

Help Them There

There are existing charities that work to improve conditions for orphans and other children with special needs:

Ukraine: Life 2 Orphans http://www.life2orphans.org/

Bulgaria: One Heart Bulgaria

http://www.oneheart-bg.org/

Serbia: Cherish Our Children International

http://cherishourchildren.org/

Matir Asurim will work to raise money for these and other charities, as well as work with these charities to carry out new projects.

For example, the lack of wheelchair access prevents many otherwise capable children from attending higher education. Creating islands of accessibility could plant the seeds of change in entire communities!

Bring Them Here

At the same time, there are thousands of children who are languishing in orphanages and institutions who cannot wait for change to come in their countries. They need out NOW. They need US.

Matir Asurim will work to create a community which supports the adoption of special needs children from places where the medical and educational resources are scarce. We will do so by:

1. Sponsoring workshops with adoption professionals and special-needs professionals, as well as with adoptive parents and parents of special needs children, in order to improve understanding of the challenges involved
2. Organizing networks of material and emotional support to assist adoptive parents during and after the adoption process
3. Integrating children with special needs into the community in a way that de-mystifies the disabilities

Saving lives – especially young lives – is a basic aspect of Tikkun Olam (repairing the world)

We can do this!

We should do this!

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Please help by following the blog by email, spreading this information to your communities by email, facebook, twitter etc.  If you are in the Boston area, please contact me if you would like me to speak to your community about this.  Thank you!

Kavanah Ki Tetze

Our congregation has recently started a new practice.  The Saturday morning service typically begins with psalms and other liturgical songs, continues with a recitation of the Amidah, then chanting the week's portion from the Torah, a second recitation of the Amidah (called a Mussaf, or additional, and representing the additional sacrifice offered in the old Temple days), and some closing prayers.  Our rabbis decided that it would be good to include a transition between the Torah reading and the Mussaf which would set us up spiritually for it.  They called this transitional segment a "Kavanah", or intention.  Today, I volunteered to do this segment, and used it as an opportunity to promote the cause of special needs orphans:

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Good morning, and Shabbat Shalom!

Today's reading covers a variety of topics on the maintenance of a civil society.  Concepts of both justice and charity are given concrete examples.  As we read the Mussaf Amidah, I invite you to read each section as likewise pointing to specific ways in which we are invited to be a "Goy Kadosh" -- a holy community, acting in G*d's image.

For example, as we read Gevurot:

You are mighty forever, Adonai; You revive the dead; You are powerful to save.  You sustain the living with loving kindness, revive the dead with great mercy, support the falling, heal the sick, release the captive, and fulfill Your trust to those who sleep in the dust. Who is like You, mighty One! And who can be compared to You, King, who brings death and restores life, and causes deliverance to spring forth!

"Gevurot" is from the same root as "Gibor" - "Hero" as well as "Gever" - "Man".  This section not only describes G*d, but lists the attributes of a heroic man (or woman!) -- a "Mensch".  It is not surprising, then, that reviving the dead is mentioned several times -- saving a life is the act most closely associated with heroism.  But being a mensch means more than just saving the day in a moment of crisis.

First, there is "sustaining the living with loving kindness".  We support and nurture our families. Let us take on doing so lovingly, not grudgingly.
Then, we say in one breath: "supporting the falling, healing the sick, and  releasing the captive".   These are aspects of Hesed and Tikkun Olam that we must seek out, get out of our own lives and help others in distress.  Who in the community - and in the world at large - needs our help?
Finally "fulfilling one's trust to those who sleep in the dust".  In other words, keeping one's word even when no-one's watching.  Even to the dead, much more so to those still living.

This section was the inspiration for the name of my initiative "Matir Asurim".  Children with special needs in developing countries are frequently neglected and malnourished, and their life expectancy is in the teens.  But worst of all, is that they are typically kept imprisoned in so-called "institutions", with no possibility of taking action to improve their own lot.  They depend on us to revive them, release them from their captivity, heal them, support them, and sustain them.  That can be overwhelming for a single "hero", but we have a whole community of "mensches" here, and I think we can take this on, as we aspire to be a "Goy kadosh".

Let me conclude with Psalm 82, which takes this idea to a the level of a personal challenge:

1. A song of Asaph. G*d stands in the congregation of G*d; in the midst of the judges He will judge.

2. How long will you judge unjustly and favor the wicked forever?

3. Judge the poor and orphan; justify the humble and the impoverished.

4. Release the poor and the needy; save [them] from the hands of [the] wicked.

5. They did not know and they do not understand [that] they will walk in darkness; all the foundations of the earth will totter.

6. I said, "You are angelic creatures, and all of you are angels of the Most High."

7. Indeed, as man, you will die, and as one of the princes, you will fall.

8. Arise, O G*d, judge the earth, for You inherit all the nations.

We are able to reach the heights of angels, in spite of our failings and our mortality.  Let us take on the Mussaf Amidah as appeals, not to G*d, but to the divine spark within each one of us. "You are angelic creatures, and all of you are angels of the Most High".

Thank you.

Another Pleven child

Brandi of Pleven is now available for adoption:



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