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.

=========

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.