Friday, 9 January 2015

Weekend reading and viewing: 10th -11th January 2015

The Most Important Thing I Did After My Son Was Diagnosed With Down Syndrome
Sharon Randall, The Mighty, 7th January 2015
... I know you feel like someone has turned off the lights and left you in a dark room without a door. You went into labor expecting that your growing family would look like all of the other families you know. Now, you’ve found out that your son has Down syndrome, and you feel completely alone ... as quickly as possible and with great urgency, you must search for someone who will travel alongside you on this new road, with an empathy that comes from having been where you find yourself now ...

Look Around (Public Service Announcement)
Paul Chitlik, Writers with Disabilities Committee, 6th January 2015
This PSA was produced by the Writers with Disabilities Committee of the Writers Guild of America to encourage screenwriters to write about people with disabilities.

Sally Felkai, Wide Awake Planet, 29th December 2014
I am about to open my daughter's first report card ever. I am curious about the mix of feelings I have in this moment ... I can already see so much progress since our late September start to the school year and school career. It is that progress that matters. But I do care what the teacher thinks. I do care what the teacher sees. I hope that my girl is seen for who she is and that the professionals can feel the vastness in there ...

What I Saw, Through Tears
Dave Hingsburger, Rolling Around in My Head, 6th January 2015
... We made love a behaviour. And we wrote plans to eliminate that behaviour ...

I don't know how you do it
Gillian Marchenko, Not Alone, 1st January 2015
... I do it because they are my children. I do it because I am their mom.

On good days, I get up in the morning and cut my losses and struggles from yesterday (because when you parent a child with special needs, there are usually daily losses and struggles). I look my kids in the eye, breathe out a prayer, hug them, and hold on a while because they are worth it, and our life is blessed ...

‘Now I See’: Looking back, but without any anger
Fiona Place, The Australian, 30th December 2014
... The atmosphere in the NICu was so different to that of the delivery suite. The focus was no longer on our son’s genetic abnormality, on a tragic outcome, but rather on his health and wellbeing. And pulling up a chair I sat as close as I could to his crib and gently stroked his cheek, and whispered his name, and told him I loved him. Over and over ...
Fiona Place is a member of Down Syndrome NSW. This story was originally published in The Best Australian Stories 2014, edited by Amanda Lohrey.

Hope and Hopefulness: the light is on!
Dave Hingsburger, Rolling Around in My head, 24th December 2014
... this is a seasonal Facebook feature ... As a result of my work with various self advocacy groups, I have a significant number of self advocates 'friended' on Facebook. It has been with a sense of real awe that I've browsed through their Facebook years. The first I looked at was a young man, (anyone under 40 is young to me) with Down syndrome ... There were pictures of him hanging with friends, being with a girlfriend, competing and winning medals at a Special Olympics event ... pictures of him living and loving his life ...

Two Years In: Down Syndrome, Recognition, and Pride
Jisun Lee, Kimchi Latkes, 19th December 2014
... I find myself pondering the word “recognition.” In that moment, was I maybe having a moment of “re” + “cognition”, as in, understanding again? From my completely self-centered parent’s perspective, I can write about the holidays as forever being a time that will remind me of when I “discovered” that my son has Down syndrome. That’s pretty silly though. My son has always had Down syndrome, after all ...
Reading this post might well lead you back to this one, written by Jisun Lee shortly after LP's birth, Tap, tap, tap

Family's passion drove Muncie hotel project
Keith Roysdon, The Star Press, 24th December 2014
... On this drizzly day at the end of October, a few hundred people have gathered in the Horizon Convention Center for the groundbreaking of the Courtyard by Marriott hotel, a few yards away at the end of High Street.

Nash, who is 13 years old and has Down syndrome, is called up to the speaker's platform by Mayor Dennis Tyler. As Nash shifts on the stage behind the mayor, eyes are drawn to his buzz cut, his bright blue shirt and his smile.

If Nash fully grasps that all the people here this day are here because of him and, by extension, his mom and dad's dedication to improving the lives of the nation's people with intellectual disabilities, the realization doesn't faze him. He chats amiably with strangers, gives his father a joking "thumbs down" after his time on stage and laughs heartily while posing for pictures ...

Emotional relating (sharing subjective experiences)
Bill Nason, Autism Discussion Page, 2nd January 2015
Emotional processing (Theory of Mind) is the ability to read the thoughts, feelings, and perspectives of others. This involves the ability to understand what they are subjectively experiencing, so we can understand how they are acting. We look for the hidden meaning behind what people say and do. We do not take language literally and (we) read between the lines ...

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