Where Hope Grows

Went to see http://www.facebook.com/wherehopegrows, which unfortunately is not showing anywhere in MA, so we had to drive to RI to catch it. Totally worth it, awesome movie! David DeSanctis's role is important to the plot, but the movie is much more about the alcoholic father and his relationship with his daughter than about Down syndrome. The movie also tastefully tackles situations where characters use the "r-word" (http://therword.org/). All in all, a very well-done independent film. Please go see it tomorrow!

Presume Competence

This article is well on the way to becoming viral.  The vision of what's possible when we presume competence is glorious in its brilliance.  Read the article.  Support the vision.  Go.

This image startled me when I read the article a second time:


100 years ago, all of the individuals in this picture would be ineligible to benefit from a college education, whether due to gender, race, or disability.  All would be considered inferior, incompetent, undeserving.

How much richer our world is when we presume competence.

JDAM - What is inclusion?

In the 70's and 80's, the buzzword was "mainstreaming".  Children with disabilities would be placed in "mainstream" classes instead of in isolated "SPED" rooms.  In the 90's and 00's, awareness developed that mainstreaming is not enough -- we must not simply place children with diverse needs among their peers, but they must be actively included in order to have their needs met.  A new alphabet soup was created, from IEP's (Individual Education Plans) to FAPE (Free Appropriate Public Education) and LRE (Least Restrictive Environment), schools grapple with how to serve all children, both academically and socially.

As this mother points out, however, true inclusion is not about procedure, but about expectations.  If a student is seen as deficient, through the lens of a diagnosis, no service or classroom environment will allow him or her to thrive. "Presuming competence" is the key to enabling all students to set, meet, and exceed high levels of performance in all areas.

Jewish tradition has a mixed record on this.  On the one hand, the Jewish emphasis on education creates an environment where all children are held to high expectations.  On the other hand, children who struggle with traditional educational frameworks suffer feelings of shame and failure.  Religious education often lags behind secular education in providing appropriate differentiation for different learning styles.  Creating true inclusion for all, children and adults with all abilities, is a challenge for our communities today.

#JDAMblogs

JDAM - Driving in snow

New England is experiencing record snowfall this month, topping 100 inches.  As I write, the blizzard is raging outside, dumping an additional foot plus on top of the several feet already on the ground from the last 4 or 5 storms within a few weeks.

In a recent Facebook conversation about our collective Post Traumatic Snow Disorder, a friend was extolling the virtues of snow tires.  I responded:

 I like driving in snow. Without snow tires. It forces me to actually slow down, and fully let go of any notion of hurry. I slow at yellow lights, let others go first at intersections, and stop for the trudging pedestrians making their way through the snow banks. It becomes almost Zen-like. I think that people driving SUV's with snow tires at full normal speed are making things more dangerous for others.

Yesterday, as I was driving in an inch or two of slippery stuff, it occurred to me that this description is similar to the way many parents of developmentally delayed children describe their parenting journey.  Slowing down and ignoring other people's timetables can be liberating.  The joy these parents describe in celebrating their children's milestones -- whenever they are reached -- is not unlike the inner peace I experience when my car whispers along the winter wonderland, knowing that the safety I create for myself and my passengers by slowing down also creates a safe place for other vehicles and pedestrians.

It reminds me that when I am driving my "SUV's with snow tires" -- my oh-so-brilliant children (dare I say, "special snowflakes"..?) -- that I should likewise take the time to both enjoy the journey and make sure that my passage in the world is a positive experience for others, as well.

#JDAMblogs

DS and race

I don't usually get into this kind of issue, but this caught my eye today:

http://roadwevesharedgzp.weebly.com/the-roadmap-blog/research-and-adults-who-have-down-syndrome

The basic data is this:


Whites have been making steady progress in improving prognosis for the various conditions associated with Trisomy 21 since the 70's, but minorities did not even start to catch up until the 90's.  I have not seen more recent data, but I am certain that differences in access to quality pre- and post-natal care, as well as educational and social resources, account for much of these differences.

31 for 21 - beauty, again

Goes well with this post:

http://www.bringingthesunshine.com/2014/10/many-faces-syndrome

31 for 21 - "disability", again

And again, another article pointing out that "disability" is a social construct.  We all have strengths and weaknesses, and some of those get labeled a "disability" while others do not.  Which weaknesses are socially stigmatized is dependent on the social context.  A few hundred years ago, my severe nearsightedness would have been a debilitating disability, since effective optometry was not generally available.  At the same time, "learning disabilities" did not really exist, since there was not a universal expectation of literacy and schooling.  Someone who did not function well in an academic environment simply pursued other endeavors which were better suited to his/her strengths.

31 for 21 - Smashing stereotypes

Teacher Born With Down Syndrome Breaks Stereotypes from ZespolDowna.Info on Vimeo.

31 for 21 - Talking with children

Children have very few prejudices (not having had a chance to learn too many yet), and have no filter or guile about those prejudices which they have absorbed.  In talking with children, we can learn what we have inadvertently taught them, for good or bad.  Such conversations are excellent mirrors to hold up to ourselves.  Perhaps we think nothing of using foul language, until we hear it echoed from the mouths of our offspring. Or we don't realize ways in which we stereotype others, until our filter-free kiddos say something that makes us cringe.  Conversely, how lovely it is when our children think it completely natural to speak politely, offer sincere compliments, and share freely, because this is the behavior they see modeled in the home.

http://abcnews.go.com/Lifestyle/learn-kids-talking-disability/story?id=26480369

31 for 21 - Suffering?

And another link:

http://www.ellenstumbo.com/down-syndrome-suffering/

31 for 21 - Superman

What kind of person do you want to be?  When it comes right down to it, what attributes do you most admire in others and wish to emulate?

https://www.lifesitenews.com/news/hes-superman-older-brother-sees-in-younger-brother-with-down-syndrome-every

31 for 21 - person-first language

http://thesqueakywheelchair.blogspot.com/2014/10/i-know-im-person-thanks-for-reminder.html

31 for 21 - National Down Syndrome Day in South Africa

This came up in my Facebook feed today:
http://www.thetreatylife.co.za/2014/10/how-one-family-is-changing-way-we-see.html

Which linked me to another Jewish Down Syndrome blogger:
http://www.metroimma.com/

Yay!

31 for 21 - beauty of Ds

I saw this meme on my Facebook feed:



With that in mind:

http://www.parents.com/blogs/to-the-max/2014/10/16/down-syndrome/what-people-cant-tell-about-kids-with-down-syndrome-from-looks-alone/

and

http://ourcorabean.blogspot.com/2014/10/beauty-in-eye-of-beholder.html

31 for 21 - Power Cafe at the Buddy Walk

Just a heads up to local peeps -- come check out the Power Cafe's table at the Down Syndrome Buddy Walk in Wakefield, MA this Sunday 11-3!

31 for 21 - siblings

This is a blog I don't usually read, but this time I did, and I thought it was very nicely done.  Enjoy!

31 for 21 - discrimination

Looks like this year, my participation in 31 for 21 will mostly be limited to linking to other bloggers....  Here is a piece by my friend Jisun, examining the real-life consequences -- in some cases, life-and-death consequences -- of "othering" people with disabilities.  In any situation where we try to justify treating people with disabilities differently, would we use the same logic to justify racial or gender discrimination?

31 for 21 - high expectations

Through the blog linkup, I came across this blog, of the parents of an adorable 2-year-old with T21 (aka Trisomy 21 aka Down syndrome).  His parents refuse to limit him based on any preconceptions.  As a result, although he certainly has delays in some areas, in other areas he is at -- or even above! -- his age-level peers.

Did I mention he's cute?

31 for 21

I don't expect to be able to participate in the full month for Down Syndrome Awareness Month, but do check out Big Blueberry Eyes for lots of cool DS bloggers!

Down syndrome stereotype

People with Down syndrome are often seen as "happy, loving, and sweet".  As anybody who knows actual people with Down syndrome, they have a full range of emotions and dispositions.  So where does the stereotype come from?

My husband suggested the following hypothesis:
Because children with Down syndrome are disproportionately aborted (or, in some cultures, institutionalized), the parents who choose to keep and raise these children are probably endowed with greater compassion and kindness than average.  And this parenting translates into children that grow up to be compassionate, kind people, regardless of genetics.

This is not a complete explanation.  Children with other disabilities are also vulnerable to abortion and abandonment, and yet children with spina bifida, blindness, or physical deformity do not have this reputation.  I think there is a feedback loop, though.  Children with Down syndrome have characteristics which elicit a different kind of parenting.  And this parenting does seem to encourage the stereotype.