31 4 21 Future face of Down syndrome

An excellent piece over at Patheos, interviewing Faycal Guedj, a Tufts University/University of Paris geneticist who also has a sister with Trisomy 21.   To a large extent, this echoes and amplifies what I wrote about disability a few weeks ago.  New research offers more choices for individuals to determine how to best improve their own (or their child's) quality of life.

Most interesting, I thought, was the commentary on a little-discussed effect on early prenatal testing (non-invasive prenatal testing, or NIPT) .  Many in the Down syndrome community worry about the projected increase in T21-related terminations.  However, Dr. Guedj points out that,

An early diagnosis of trisomy 21 with NIPT (10 weeks of gestation) offers a tremendous opportunity to intervene in utero using safe and well-designed therapeutic strategies that will potentially lead to a very significant, which is not to say a complete, normalization of brain development and cognitive outcome in newborns and children affected with DS.

....as well as cardiac and thymic development, as he explains later.

In other words, more research, more treatments, and more attention will translate into both higher quality of life for individuals and more acceptance for differences.  As with nearsightedness, more options empower individuals to make the choices that are right for them, which ultimately reduces, not increases, the stigma. It is not either/or, but and/also.

31 4 21 Boston Sardine Tour

I love my minivan.

My aunt and uncle are traveling around the US with a bunch of HIGH SCHOOL buddies (we are talking people in their 60's), and they made a 1-day stop in my neck of the woods. They wanted me to show them around town.

I have an 8-seater Chevy Venture. There were 8 of them. Plus me.

After some consideration of the various alternatives, we decided to try piling all of them into my car. Amazingly, it worked. I drove them all over in a quick survey of the major sites, and apparently they had a blast. They never did get a chance to take a ride on the Boston Duck Tours. But at least they had the Boston Sardine Tour.

31 4 21 2013

No, that's not my gym locker combination.

It's October, which has 31 days.

It's also Down Syndrome Awareness Month. Down syndrome is also known as Trisomy 21.

So this is the 2013 31-for-21 blogging challenge, hosted by Big Blueberry Eyes.

A new year at Learning Program

Today was the first meeting of the year at the Down Syndrome Learning Program, affiliated with the Boston Children's Hospital.   Like last year, there were 2 sessions.  In the first session I worked with the "Level 2" class, which I recognized as last year's "Level 1"s. They have grown so much!  So much more coordinated, their speech was so much improved, and at least half of them already knew their letters and numbers.  Then I worked with the "Level 3" group, who were likewise impressive in their ability to flow with the schedule and engage with the instruction.  I felt so energized and happy -- and looking forward to seeing some of them at our local Buddy Walk in 2 weeks!

Here is their video from the early years:




The children featured in this video are now 12-13 years old, and have graduated to the "Lunch Buddies" program.  I saw several of them on my way out.   What wonderful promise!

Just in time!

With little over a week before his 16th birthday would make him ineligible for American international adoption, a family has committed to adopting "Brenton".

Now he really has a reason to be so happy -- and he doesn't even know it yet!

Haftorah Beam - Bereishit

The Haftorah for Bereishit is Isaiah 42:5-43:10

It opens,

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:
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.

This is clearly connected thematically to the story of creation, and specifically the creation of light out of darkness. It stresses the role of the Jewish people as G*d's partners in creation, as well as the beneficiaries of G*d's Creation. The first step of Genesis was the creation of light. The first step of acting within the Covenant, as a Light of Nation, is opening eyes.

We are furthermore encouraged to see each day as the first day.  In fact, Bereishit does not refer to the first day as "first" but simply as "one day".  If no days ever followed, it would have been sufficient.  So we see that every day is "one day" -- sufficient onto itself to make a new start:

¹⁰ Sing to the Lord a new song,
His praise from the ends of the earth — 

The reading continues, echoing the struggles of Adam and Eve:

Chapter 43
¹But now thus said the Lord —
Who created you, O Jacob,
Who formed you, O Israel:
Fear not, for I will redeem you;
I have singled you out by name,
You are Mine.
² When you pass through water,
I will be with you;
Through streams,
They shall not overwhelm you.
When you walk through fire,
You shall not be scorched;
Through flame,
It shall not burn you.

We are expected to struggle with temptations, but be assured that G*d is with us and wishes us to succeed. We are promised that even when banished from the Garden of Eden, that G*d will be with us in all our difficulties.

Haftorah Beam - Introduction

Happy New Year!  We just finished the yearly cycle of Tishrei holidays.  Beginning with the magestic Rosh Hashanah, then the intense Days of Awe which culminate in the fast of Yom Kippur.  A quick break for building the Sukkah, and we were in the week-long autumn harvest festival of thanksgiving.  The Sukkah has not yet come down, and we find ourselves once again in the sanctuary for Simchat Torah, this time dancing our hearts out with the Torah scrolls.  And then.... routine returns, as we begin anew from Genesis -- the final beginning.

And with that, I have completed a year of Torah commentaries.  So what's next?

In addition to a weekly reading of Torah, it is customary to read a chapter from one of the Prophets, which usually has a similar theme to that week's Parsha.  This custom originated when the Jewish people were in exile and forbidden to read Torah.  These alternate readings were substituted as a subversive practice. And then continued when it was no longer necessary.  This year, I will write about these additional readings in the Haftorah Beam feature.

Why "Beam"?  I like the double-meaning.  I will try to illuminate these readings with a beam of light; and they are supporting and connecting beams that scaffold our understanding of Torah.

I am not very familiar with the Haftarot.  This will be a real learning experience for me!  Look for the first installment in the next few days.....