Down Syndrome Awareness Post #8
Angela Lombardo, Down Syndrome Program at Boston Children's Hospital, 8th October 2015
For some years, Angela Lombardo, the clinic coordinator at the DS Program at Biston Children's Hospital, has written 31 Facebook posts for 31 days during Down Syndrome Awareness Month (October), and she is doing so again this year. This one is from yesterday - they are all worth reading:
It’s important to know the history of disabilities to appreciate where we are now and to keep the expectation and bar raised high for our kids and kids to come after ours. We need to hold the torch that other parents carried before us. Someone walked the path you are on ... years ago someone created that path. Someone’s tears, sweat and love widened that path for us.
We no longer send our babies to institutions. We expect our children to be educated. We want our children to be important community members. We want our children to live to the best of their own personal potential. We treat them like human beings who deserve equal opportunities that others are offered.
This all is possible because of those who stood up for their children’s rights many years ago. We have to honor those before us by appreciating their struggles and using them as motivation to keep that bar raised, to demand best practices in education, to carry that torch and keep breaking barriers that still exist.
I have a neighbor who is a 52 yr old man with DS. He lives with his mother who I used to talk to a lot when my son was younger. She mentioned once she was sad seeing how my son was learning to read and her son was never given the chance. I told her that she is my hero because when he was born, the doctors immediately told her he has DS and asked if she knew where she wanted him to be sent. She told them he comes home with me. She wouldn’t listen to their doom and gloom and insisted her son will be part of their family.
She gave him the best life she could. He was never taught to read. She is not at fault for that. It was the time.
It’s a new time. She helped us get to this new time. This mom and others before us paved our way. To those before me, I say thank you!
Check out this interesting timeline to learn a bit of the history.I’m Not Cute, I’m a Woman: a sister’s fight to challenge perspectives of Down syndrome
Lucinda Bain, MummaLove (guest post), 8th October 2015
... The funny thing I’ve noticed about Down syndrome compared to other disabilities is that there is this weird element of cutesy when people talk about it. I have never heard a thirty-something year old with cerebral palsy described as “so cute!” yet I get variations of this comment about my (married, employed, independent, adult) sister constantly ...
... The funny thing I’ve noticed about Down syndrome compared to other disabilities is that there is this weird element of cutesy when people talk about it. I have never heard a thirty-something year old with cerebral palsy described as “so cute!” yet I get variations of this comment about my (married, employed, independent, adult) sister constantly ...
Sipping Lemonade, 4th October 2015
... we sat together in the courtyard next to an over-sized pot of pansies and talked for over an hour. Becky babysat Kate and the other little ones, herding the 3-year-old away from the fountain, as Donna shared their story ... I realized that what Donna gave me that summer evening was not just great conversation and encouragement — but also, awareness ...
My son is different - and that's OK!
My son is different - and that's OK!
Stephanie Holland, Walkersville Mom, 10th September 2014
A thought that’s been weighing heavily on my mind lately is one that’s not going to be popular. It seems to go against things that are important to me and many others. But, if I’m going to be true to myself and to Josh, I have to say it. Out loud. My son IS different ...
What Does My Brain Tumor Mean for My Life as a Mother?
A thought that’s been weighing heavily on my mind lately is one that’s not going to be popular. It seems to go against things that are important to me and many others. But, if I’m going to be true to myself and to Josh, I have to say it. Out loud. My son IS different ...
Alison Piepmeier, New York Times Parenting Blogs, 6th October 2015
... All the while, the thoughts and fears are chasing themselves around in my head. How can I take care of her ... She can be difficult to understand: Who will listen to her, follow her communication, be able to share it with others? Will other people see Down syndrome as simply part of who Maybelle is? And see her needs? Can I work hard enough that I can keep every possibility open for her — even if I’m not here to fight for her?...
Paul K Longmore Institute on Disability, 6th October 2015
With October officially recognized as National Disability Employment Awareness Month in the U.S., we thought it would be fun to give folks a chance to rate their own awareness. Jot down your answers and then proceed to the next page to total your score ...
The public gaze - on being invited to be a subject of the Body Bizarre documentary
Carly Findlay, 8th October 2015
Last month I wrote some advice you might like to consider when approached by the media to tell your story about your rare medical condition/disability/facial difference ...
For my own amusement, I put my own advice to the test when I received yet another invite to take part in a documentary about rare medical conditions. I think the producer just expected me to say yes, of course I'll be exploited by a voyeuristic program.
I emailed the producer the questions I stated in my post. I was frank with her - explaining my concerns about how they portray disability. I wonder if she's ever had such rigorous, assertive questioning before?
The producer surprisingly emailed me back, addressing my concerns ... But the show fails. Epically ...
Why I Will Never Say I ‘Fight’ My Disability
The public gaze - on being invited to be a subject of the Body Bizarre documentary
Carly Findlay, 8th October 2015
Last month I wrote some advice you might like to consider when approached by the media to tell your story about your rare medical condition/disability/facial difference ...
For my own amusement, I put my own advice to the test when I received yet another invite to take part in a documentary about rare medical conditions. I think the producer just expected me to say yes, of course I'll be exploited by a voyeuristic program.
I emailed the producer the questions I stated in my post. I was frank with her - explaining my concerns about how they portray disability. I wonder if she's ever had such rigorous, assertive questioning before?
The producer surprisingly emailed me back, addressing my concerns ... But the show fails. Epically ...
Why I Will Never Say I ‘Fight’ My Disability
Karin Hitselberger, The Mighty, 30 September
Recently, I saw a picture on Facebook that said, “I fight cerebral palsy. What’s your superpower?” So much about this illustration focusing on cerebral palsy awareness struck me as wrong and uncomfortable, and it left me with a kind of nauseous feeling in my stomach ...
Recently, I saw a picture on Facebook that said, “I fight cerebral palsy. What’s your superpower?” So much about this illustration focusing on cerebral palsy awareness struck me as wrong and uncomfortable, and it left me with a kind of nauseous feeling in my stomach ...
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| Location for Step Up! for Down Syndrome Nowra - Moona Moona Creek, Huskisson, Sunday 18th October |
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