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Sunday, October 29, 2017

Down Syndrome Awareness Month: DIGNITY Matters!

Me showing off my esteemed artwork at school

Here is the official statement from Miriam Webster:

the quality or state of being worthy, honored, or esteemed
bearing, conduct, or speech indicative of self-respect or appreciation of the formality or gravity of an occasion or situation. (Thus my auspicious blog)
nobility or elevation of character; worthiness:
dignity of sentiments.

And here is the official statement from the United States government, thus validating my dignity on a governmental level and celebrating my existence, as we should everyone's!

During Down Syndrome Awareness Month, we celebrate the significant contributions that people with Down syndrome make to their families, to their communities, and to our Nation. We also salute the family members, caregivers, medical professionals, and advocates who have dedicated themselves to ensuring that these extraordinary people enjoy lives filled with love and increasing opportunity. As a result of these remarkable efforts, people with Down syndrome are living longer, more enriching lives than ever before. 
This month, we renew our Nation’s strong commitment to promoting the health, well-being, and inherent dignity of all children and adults with Down syndrome. Through sustained advancements in education, research, and advocacy, we will further empower those with Down syndrome to pursue the American Dream of independence, pride in work, and full participation in civil society. We will also continue to increase public awareness regarding the true nature of this condition, and to dispel the stubborn myths about the degree to which it is disabling. 
Sadly, there remain too many people – both in the United States and throughout the world – that still see Down syndrome as an excuse to ignore or discard human life. This sentiment is and will always be tragically misguidedWe must always be vigilant in defending and promoting the unique and special gifts of all citizens in need.  We should not tolerate any discrimination against them, as all people have inherent dignity. 
The approximately 250,000 Americans with Down syndrome truly embody the great spirit of our Nation. They inspire joy, kindness, and wonder in our families, our workplaces, and our communities. We will always endeavor to make sure that their precious gifts are never maligned or taken for granted.

Saturday, October 28, 2017

Down Syndrome Awareness Month: SEATING Matters!

...Seating matters? you may ask. Yes, because social life, friendships, inclusion and real relationships matter.

And it's not really seating, but the point being where one is situated in a given situation.

As we continue to bring awareness in Down Syndrome Awareness Month (see yesterday's post, Language Matters), another facet of which to be aware is the emotional struggle that many parents go through as they usher their children into various social environments. Every parent wants their child to be included and loved. But sometimes it is harder for the child - and his or her peers - to relate, or to keep up.

In today's article one mother recounts her experience on the holiest day of the year for her, as she split her time praying while worrying about her daughter not fitting in with her peers playing outside.

I have no solution to present, just to become "aware" of this issue as well. Becoming aware is the first step to making a difference in a situation.

God bless Jodi Samuels, who wrote the following article, as she helps the gorgeous and talented Caila navigate life.

Why I Cried This Yom Kippur

I requested a very specific seat in shul - an aisle seat but in line with the window. I need to be able to keep an eye on Caila, who is 9 years old with Down syndrome, while she plays outside. Temira, my other daughter who is 13 and I take turns every 15 minutes to go check on Caila and so we need easy access in and out.
Every time I looked out the window my heart ached for Caila. She was standing or sitting alone looking so sad. Caila is unusually high functioning for her diagnosis and not blissfully unaware of her surroundings. She knows when she is included and when she is being left out, she tries so hard but it is sometimes hard for her to manage the dynamics in a big group, especially in an unstructured environment. She is fine one on one or in the structured tefillat yeladim (children’s group) at shul, but when all the kids are running around in a disorganized play routine it is hard for her to process and keep up. And more than anything Caila craves playing with the other kids.
Our telltale sign when she is anxious or stressed is that she picks at the skin on her lip. Yesterday, her lip was bleeding. By the time services were done I was a wreck and I was waiting for Gavin outside. As soon as I saw him I just burst into tears in front of everyone in uncontrollable sobs. Watching Caila struggle so much for the social inclusion that she craves was just too much for me.
It is also difficult for the little girls to understand and accommodate for Caila. They too are trying to fit in and survive the complicated group dynamics of young girls. When they are alone with Caila it's easier to accommodate for her. When one, particularly sensitive mom went out of her way to make sure Caila was included it really helped. She picked one girl to pair with Caila on an activity and Caila was beaming. It was the best part of the day.
I also have guilt and often wonder if it's fair to push her in inclusive environments – perhaps more special needs environments would be easier for her. But on the other hand I know that she had difficulty in special needs environments because she is so high functioning. In an afternoon program for kids with special needs she mothers the kids her age instead of really playing with them. She is ahead of her special needs peers academically so they put her with the teenage girls which is also socially not a solution. So how can we help Caila?
At school, we are very fortunate to have a wonderful assistant (sa’ayat) that helps mediate the social integration with the other children during recess and there are some amazing mothers of children in Caila’s class who have Caila over or bring their kids for playdates and sleepovers but sometimes with the busy schedules that everyone has, remembering Caila falls through the cracks. On Purim this year, Caila delivered her mishloach manot to her school friends’ homes and then waited at our apartment for her friends to bring her mishloach manot…………and only one came. She was so upset.
I know that Gavin and I were given Caila for a reason and I know that Hashem only gave her to us because we can cope with this challenge. Yesterday, I prayed with all my heart for the wisdom to know how to help Caila and the strength to keep making sure Caila achieves everything she can. It’s just some days are a little harder than others……….

Friday, October 27, 2017

Be-Awareness Month for people with Down Syndrome! Language MATTERS

Talia is well aware of my existence

And knowing that, she may also caution you to: Beware!

Beware! This is a month where I can take the concept "it's all about me" to a legal level. October has been declared Down Syndrome Awareness month. And as there are only five days left in this month, barely, I had better get cracking and write something.

Or, I should share some brilliance that has already been published. There is no one subject of which to be aware when it comes to Down syndrome but rather the many facets of individual people who possess an extra chromosome. You can be aware of my existence, and if you're reading this, you are! You can be aware of my biochemistry, and if you are you're a scientist or a doctor, or a mom who has become slightly obsessed with balancing my biochemicals. But you can also be privy to some vignettes of of lives that perhaps may be a bit different than yours.

I will begin with a hot-off-the-presses article by Beth Steinberg, one of the other Israeli Wonder Women that live here aside from Gal Gadot. Beth's article brings our awareness to language.

"Language matters," she reiterates. 

And amazingly, with politically correctness having gone wild, a word still lurks that should've been stamped out long ago. How did this one get by? Or even as Beth notes,how is it "back: repurposed, reworked, and better than ever" ??

It's one spicy and challenging article. Curious? Read on...

What “Tard” Are You Anyway? Name Calling In 2017

Whether about gender and sexuality, developmental difference or politics, “retard,” is back: repurposed, reworked, and better than ever.

Originally published here:

Are you a Libtard or a Libertardian? A Conservatard or a Neotard? A Gaytard, Fagtard or Lestard? Or maybe just a Tard, described in the Urban Dictionary as “one so retarded, they do not deserve the ‘re’.”

Squirming as you read those words? Sure you are. You’re a nice person. You don’t say the word ‘retard,’ certainly not to someone who’s actually retarded, meaning who has developmental delay, but you might use the word when you or a friend does something stupid or idiotic – you know, something that’s just ‘retarded.’ (A 2014 poll by the National Down Syndrome Society noted that 90% of responders said exactly the above sentiments as to their use and misuse of the word.)

You might certainly use the word retard about anyone who’s on the opposite side of your political and religious beliefs, right? They are such lunatics after all. Horrible people, undeserving of your regard.

In 2017, trolling someone else’s feed, name calling, and plain old online-nastiness is the nature of social discourse today, aided and abetted by the invisibility-visibility cloak of social media.

To be mean and show our smarts? It’s an inalienable-online-right, up there with bearing arms and buying bump stocks for our AK-47’s, or our Twitter feeds.

Just this past week, I was taken aback by a recent thread on Facebook ,in response to an article about President Trump, where a commenter noted, “Please, he is an idiot…retarded people have an excuse for their behavior, Trumpturd…does not!”

I sat back and thought for a moment. If a person has a known developmental delay, he or she has the right to bad behavior.

Really, who said so?

And, is that why people without disabilities continue to believe that people with disabilities are dangerous?

A 2011 poll by Akim, an Israeli service provider and advocacy organization for people with developmental delay, reported that 25% of respondents believed that people with developmental delay are violent and threatening. A follow-up poll in 2016 which measured the responses of both people with and without disabilities, showed the kind of emotional disconnect seen regarding the use of the word retard. While people without disabilities responded more positively than in previous years as to befriending (70%), and/or living near someone (90%) who has developmental delay, people with disabilities reported that they are often spoken to rudely and inappropriately, and almost 50% of those polled said they’ve been attacked and abused by others because of their cognitive differences.

Who’s exhibiting bad behavior then?

Just this morning, as I gently nudged our 20-year son with disabilities – Down syndrome and autism, both forms of developmental difference – through his morning routines, he paused to offer me a morning hug and a snatch of a song that was running through his head. A song, that much to his annoyance, we haven’t recognized after an exhaustive search through his playlist and youtube history. But I digress. After a moment’s irritation – I hadn’t had any coffee yet – at his slowing us down during the morning rush, I laughed and thought to myself, “Akiva is such a nice guy, why don’t people appreciate that more about him?”

Let me put that better. Akiva who prefers touch to language, often forgets to use language when interacting with others. If I’m there, I’ll remind him and help him facilitate conversation with others. But in those awkward first moments, especially if they don’t know him, they’ll look at me and say, “it’s okay, it’s okay,” and I say, “it’s not okay. Akiva wants to make conversation, and if you’ll work with him, he can.” And if Akiva has a moment of frustration and verbal fatigue where he might pinch or scratch, he is always asked to reckon with his behavior, as it is not nice, nor is it acceptable. His developmental differences do not allow him to be a jerk.

But back to that Facebook thread and the skewed notion of “retarded people have an excuse for their behavior,” I commented, “I’m no fan of 45 but would ask you not to compare those with developmental delay as having an excuse for bad or ‘idiotic’ behavior…Being retarded cognitively, means your development and your understanding and ability to gain certain skills, may be delayed, but that may not delay your understanding and caring of others. Retarded does not mean you’re an asshole.”

Language matters. Language matters. Language really matters.

Beth Steinberg is the Executive Director and co-founder of Shutaf, Inclusion Programs for Children with Special Needs in Jerusalem. A believer in Jewish camping, Beth is a graduate of Massad and Ramah camps, where she learned the importance of informal education programs as a platform for teaching Jewish and social values. As a parent of a child with special needs, she struggled to find workable, appropriate activities for her child. Beth believes that a well-run inclusion program can help educate and change values, creating meaningful and lasting social change.