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

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

31 for 21: Make a difference NOW!

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

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

Hat Tip Leah S.

Thank you!

31 for 21: The Ugly Duckling, another twist

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

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

31 for 21: Torah Connection - Lech Lecha

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

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

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

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

31 for 21: Progress in Russia

If you understand Russian, check out this video:




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

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


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




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

31 for 21: Serbia

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

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

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

31 for 21: The Ugly Duckling

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

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

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

31 for 21: Alexander, Elden and Megan

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

Here is Alexander:



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


From another region of Russia, here is Elden:

 

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

Age 2.5

Age 3.5

   

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



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



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

31 for 21: Abortion and NBC

I barely posted this morning post on abortion in Judaism, and my husband sends me this link.  NBC Today chief medical editor Nancy Snyderman is quoted,

“I think the future will be such that you’ll find out that your child may have a genetic hit. You can fix that genetic problem, and improve your chance, a child’s chance…”

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

With great power comes great responsibility.

What do you think?

31 for 21: Abortion in Judaism

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

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

31 for 21: Torah Connection - Noach

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

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





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

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

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

31 for 21: Who will save Sasha?

Whoa!  Somebody is looking out for Sasha:

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

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

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

31 for 21: Torah Connection - Bereishit

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

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

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

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

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

⁶ I the Lord, in My grace, have summoned you,
And I have grasped you by the hand.
I created you, and appointed you
A covenant people, a light of nations —
⁷ Opening eyes deprived of light,
Rescuing prisoners from confinement,
From the dungeon those who sit in darkness.

 After several verses extolling G*d and Creation, we get to this:

¹³ The Lord goes forth like a warrior,
Like a fighter He whips up His rage.
He yells, He roars aloud,
He charges upon His enemies.
¹⁴ "I have kept silent far too long,
Kept still and restrained Myself;
Now I will scream like a woman in labor,
I will pant and I will gasp.

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

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

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

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

⁹ All the nations assemble as one,
The peoples gather.
Who among them declared this,
Foretold to us the things that have happened?
Let them produce their witnesses and be vindicated,
That men, hearing them, may say, "It is true!"
¹⁰ My witnesses are you

—declares the Lord—

My servant, whom I have chosen.
To the end that you may take thought,
And believe in Me,
And understand that I am He:
Before Me no god was formed,
And after Me none shall exist —

 The bolded section here is often misread in Christianity as referring to Jesus.  Rather, it is the People of Israel who are the chosen servant.  It is the task of every Jew to be a Light Onto the Nations, and to create a community that manifests G*d's glory.

31 for 21: A different SN adoption story

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

Meet Mama Kong.

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

She is 63 years old.

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

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

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




Wow.  Just wow.

Speak truth to power much?


(Ooops, forgot to Hat Tip Leah!)

31 for 21: Pity

Pity.

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

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

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

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

I pity the fool.

31 for 21: Disability? What disability???

 Pure inspiration!!

31 for 21: Infantile spasms

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

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

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

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

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

31 for 21: Simchat Torah

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

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

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

In the Beginning.

31 for 21: Why community is important

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

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

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

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

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

31 for 21: Abortion

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

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

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

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

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

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

31 for 21: Buddy Walk 2012 Pictures!

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

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

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

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

Thank you to everyone who supported us!

31 for 21: Disability?

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

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

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

31 for 21: Water and Fire

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

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

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

Which brings us to the final metaphor.

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


=========
Religion Connection, for those who want it:

1. We just passed Yom Kippur, when we not only repent of our sins, but we contemplate our own mortality.  We ask,

"who will live and who will die; 
who will die at his predestined time and who before his time; 
who by water and who by fire...."

 2. Proverbs 24:11-12:

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

31 for 21: About that fire

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

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

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

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

31 for 21: I love home-preschool!

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

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

31 for 21: The greatest special need

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


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


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

31 for 21: A mid-life crisis?

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

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

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

Am I having a mid-life crisis?

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

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

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

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

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

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

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


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

31 for 21: How I got here

I have no children with Down syndrome.   I don't really know anyone personally with it.  So how did I get involved in this?

Down syndrome really first entered my consciousness during  the 2008 elections, with Trig Palin.

Then my daughters introduced me to the show Glee, which features characters with Down syndrome and other disabilities.

My youngest child was born a few months before I turned 41.  The possibility of Down syndrome was very real, and my husband and I discussed at length what the implications would be for our family.  We realized that, with everything we knew at that point, that we would not abort a child with Down syndrome.  As it turned out, he was born with 46 chromosomes, but the idea that a child with a disability would not be a tragedy was planted.

In January of 2012 I was taking a seminar through Landmark Education, which challenged participants to think of "something big enough to be worth your life being about".  Without thinking much, I put down the first thing that popped into my mind: "Making a difference for children with Down syndrome."  I promptly forgot about this when I got home.  But after that week's episode of Glee, I did in fact start Googling for Down syndrome volunteering opportunities, and found a program through Children's Hospital Boston, which I contacted.

I also found this video and this blog.  The ABC feature was very recent at that time.  Likewise, Katie Musser had just come home a few weeks earlier, and it was not at all clear that she would even survive.  Here is her full story since then.  It is rather long, but since I have been following it -- Susanna Musser writes exquisitely! -- this has had the most impact on my feelings about special needs adoption. Please read her story -- it is fascinating!

This past summer, I took another Landmark Education program, which challenged me to take an issue of importance to me and make an impact in the community around it.  And here I am.


Oh, and please sponsor my family in this Sunday's Down syndrome Buddy Walk!  Thanks!!!

31 for 21

You may have noticed a new button on the right side of this blog.  October is Down Syndrome Awareness Month!  I think I jumped the gun on that a bit with a few of my posts in September, but I look forward to continuing that momentum this month.

To start, my family will be participating in the Massachusetts Buddy Walk this Sunday!  Please sponsor us!

If you like, you can also click back through the button and see what other people are writing this month.