Weekend reading viewing: 20th - 21st December 2014

The Upside of Down Syndrome

Daniel Allott, National Review Online, 17th December 2014

... “Mock my pants, not my sister” provides a glimpse of the passion with which Skotko advocates for his sister and all people with DS. But Skotko is much more than an advocate. He is also one of the country’s leading medical clinicians, geneticists, and Down-syndrome researchers.

The goal of his work, as he explained it to me when I visited him at Massachusetts General Hospital, is to make “tomorrow better than today” for people with Down syndrome. Put another way, Skotko is using his extraordinary talents to help move society beyond mere tolerance for people with DS and toward a celebration of them ...

Enjoying: December

Kelle Hampton, Enjoying the Small Things, 15th December 2014
Kelle Hampton is well known for her beautiful photographs and her blog that mostly focuses on her children, including four year Nella, who has Down syndrome. Here is another excellent post, about December in Florida - enjoy all the photos (she's a professional), and be delighted by the comments, that you might well relate to from your own family's everyday doings, but make sure you scroll down to the very last one of Nella, about which Kelle wrote on her Facebook page ... 'This face. How I want to live life.'

Why My Son Doesn’t Care About Christmas 

Anne Penniston Grunsted, Role Reboot, 16th December 2014

... I think of Bobby as having a thick layer of insulation between him and the world. The insulation slows his reaction time, makes it more difficult for his inner thoughts and actions to express themselves to the rest of us. And it makes it more difficult for the information of the world to reach him. This insularity is a challenge when teaching him vocabulary or reading or math. What another child might understand in four or five repetitions may take Bobby 500 repetitions to learn.

But the insulation that makes it more difficult for useful information to reach him also makes him immune to much of the toxicity that seeps into the rest of us. Because he processes less than the typical person, the standard of what gets through is higher—to resonate with my son, information must add intrinsic value to his day to day happiness ...

To the Woman Who Asked to Take a Closer Look at My Daughter With Down Syndrome
Maggie McKelvey, The Mighty, 16th December 2014

... I felt like a huge weight had been lifted. We would be OK. She would be OK. This woman gave me strength to start to raise my daughter to do and be anything she wants ...

What you didn’t know about the latest Target child model

Kat Abianac, Parker Myles, 16th December 2014
... children who may fall within certain demographics can easily be under-represented. And that’s not fair, or just. All our beautiful children, without exception, deserve opportunities like these ...

From passion to paycheck
Jessie, VATTA, 15th December 2014
I always wanted to be a dancer ...  this was my journey to find myself. And now, I’m 24, soon to be 25. I am a professional dancer! I get paid to teach and to perform ...

Emily's Christmas List

Orange Juice Flavour Sky, 13th December 2014
Emily is a list girl ... Last year, Emily’s Christmas List contained such treasures as a nest, a carpet, Ant & Dec and some spinning plates – a fairly eclectic collection of wishes I’m sure you’ll agree. So I waited in eager anticipation of this year’s Christmas list. What could she be after this time? – a newly seeded lawn maybe?, a pair of curtains? or perhaps a cutting from Demis Roussos’s beard? Whatever it is, how on earth could she top last year’s wish list?

I grieved at first for the son I dreamed about while I was pregnant

Kat Abianac, MammaMia, 12 December 2014
Dear Elly - I consider us friends. I’ve known you for quite a while, long before your beautiful newborn Rex was born last week. The day he was born, however, we suddenly had a LOT more in common. Because Rex was born with Down syndrome, just like my toddler Parker ...

Jean-Pierre Crépieux receives the French Legion d’honneur

L'Arche International, 8th December 2014

On Monday December 8th, Jean-Pierre Crépieux will be the first person with an intellectual disability to receive the Legion d’Honneur, France’s highest honour. Established in 1802 by Napoleon Bonaparte, the Legion d’Honneur rewards “personal merit in the service of the nation.” Jean-Pierre is being recognised for his contribution to L’Arche and the social development of men and women with an intellectual disability ...
Photos of the occasion are on the L'Arche Facebook page, here

ABC News Special: Stella Young Memorial

ABC iView, 19th December 2014
Today's memorial service for the late Stella Young - writer, broadcaster and comedienne who did much to help Australians understand disability issues. Melbourne Town Hall, and broadcast to Federation Square. Available online until 18th January 2015. 81 mins

Accessible Arts News - December 2014

National Carers News - December 2014

Weekend reading and viewing: 13th - 14th December 2014

One-on-One with a Leading Down Syndrome Expert

Daliah Singer, 5280 (The Denver Magazine), December 2014 issue
Dr. Dennis McGuire on how perceptions of adults with Down syndrome have changed ...

Looking for Alice
Sian Davey
This series is an illustration of family life - all the tensions, joys, ups and downs that go with the territory of being in a family ... My daughter Alice, born with Downs Syndrome, is no different to any other human being. She feels what you and I feel ...

And Holland has Tulips
An interactive photo essay by Lani Holmberg

The pioneers who first got jobs outside sheltered workshops

Anna Patty, Sydney Morning Herald, 12th December 2014

Anna Chan has never considered herself a pioneer. But her decision 30 years ago to look for a job in the open labour market, bypassing the traditional path to a sheltered workshop, has earned her that recognition. Ms Chan, who has an intellectual disability, began work at a childcare centre in Concord in 1984 and today is one of its longest-serving employees ...

Stella Young's untimely death last weekend has prompted tributes nationwide, and internationally, within the disability and wider community. A public memorial service will be held in Melbourne, next Friday (19th December). Some links were posted earlier in the week. Here is a small additional selection:

Finding a legacy worthy of you … Craig Wallace, On the Record, 10th December 2014

Almost two days after learning of the death of Stella Young I’ve been slowly starting to think about how on earth we find a “legacy” worthy of her. It’s hard, so very hard, to think about the idea of a legacy for someone as vital and alive as Stella. Just as I can’t bring myself to use the pre-fix “the late” when talking about her ... 

Don't bugger off now: we need you, Graeme Innes, Howzat, 10th December 2014

... I would have loved her to write my eulogy. I never expected or wanted to write hers. “You can’t bugger off now: we need you.” ... 

The legacy of Stella Young, Australian disability advocate and comedian Elahe Izadi, Washington Post, 8th December 2014
... Young often spoke about how life in her body was not all that different from the lives lived by others without osteogenesis imperfecta; it was the way the world responded to her disability that made it challenging ...

Weekend reading and viewing: 6th - 7th December 2014

When a Little Girl With Down Syndrome Showed What's 'Possible'
Amy Julia Becker, Good Morning America, 1st December 2014

As the mother of an 8-year old with Down syndrome, I sometimes get annoyed by headlines trumpeting the everyday accomplishments of kids with intellectual disabilities ... I want to uphold the intrinsic value of all the kids with intellectual disabilities, especially the ones who don’t make the headlines.

Wise words from a city parent

Pippa Hodge, Brighton and Hove Independent, 30th November 2014

Imagine there was a “language-sensitivity spectrum” drawn as a line from cool blue to red hot. At the blue end sit those of us who think it doesn’t really matter how a disability or a condition is described. And at the reactive red end sit those of us who are often very uncomfortable with the words and terms used by professionals, friends, family, or passers-by ...

The Importance of Someone "Like Me" in the Movies

Mardra Skiora, The Huffington Post, 19th November 2014

After a screening of the live action short film Menschen, Sarah Lotfi was approached by a young woman who exclaimed, "That's me!"

The young woman with Down syndrome referred to her resemblance to the costar of the film, Connor Long. Seeing someone who looked a little bit like herself on the movie screen was an exciting and moving moment for her, and an enlightening moment for Lotfi. "It moved me as a filmmaker," said the director ...

How special needs advocacy is becoming a ‘cliché’ !
Two Minute Parenting, 1st December 2014
... How can we be happy by giving it back to a 70 year old who made the effort to approach us and ask about the ‘syndrome’ ...  (Our kids) are becoming active members of our social systems ... While this does mean that people should get sensitive about them but at this moment of big social change, it also becomes our duty to facilitate the process by educating others and by being accommodating who don’t know any better ...

The dual diagnosis merry-go-round

For Elysium, 29th November 2014

... I am no stranger to evaluations ... they have big posters in the waiting room of the pediatric rehabilitation offices that chart typical kids’ development. I said I stand there reading the posters while I wait to take Kyle in to speech therapy for his incredibly low speech skills or into occupational therapy for his significantly delayed motor skills, and reading that poster makes me feel like crap ...

The untold story of Indigenous Australians and disability: five questions to Scott Avery

The Guardian, 28th November 2014
... When unnecessary suffering is caused by people being denied the health care they desperately need, or when people are wrongly placed in institutions or prisons when they just shouldn’t be there – that makes me passionate too ...

Panel: Those with disabilities should train police

The Washington Post, 4th December 2014

A Maryland commission formed in response to the in-custody death of a man with Down syndrome says the state should create a center in his name where people with intellectual and developmental disabilities would learn how to teach organizations how to effectively interact with people like themselves ...

Weekend reading and viewing: 29th - 30th November 2014

A big day for the equal rights of people with intellectual disability

Inclusion Australia, 25th November 2014

Monday, 24th November 2014 has been a big day for standing up for the equal rights of people with intellectual disability.

First, the Senate rejected the Government’s bill to introduce the BSWAT Payment Scheme Bill ... Second, the Australian Law Reform Commission proposes reform to Commonwealth and State laws to ensure that supported decision making is encourage with the right support provided ... Third, ABC 4 Corners exposed sexual abuses of people with disability by carers employed by Yooralla, and a governance culture that was inadequate to protect people with disability from this abuse ...

Can She Feel?

Dave Hingsburger, Rolling Around in My Head, 25th November 2014
Horror, yes. Disgust, yes. Surprise, no. Like many of you, when I heard that in a Los Angeles court an expert testified that a 9 year old girl with an intellectual disability would not experience trauma because, essentially, the less intelligent you are, the less trauma you will experience. Further he stated that, even though this girl was repeatedly assaulted her disability was a 'protective factor' regarding trauma ...

Down Syndrome Bowling Group at SuperStrike Warners Bay

Simon Walker, Newcastle Herald, 24th November 2014
It's never easy moving cities. Finding contacts and friends takes time. Getting familiar with services is a matter of doing the hard yards.And bringing up kids adds another dimension, particularly if they have special needs. But Lisa Taylor knows when to strike, and bowling is right up her alley ...

Why the Film 'Menschen' is Not “Just a Movie"
Mardra Skiora, Medium, 20th November 2014

I suppose everyone has a “button” phrase. Something said to them, even in passing, that hits a nerve. Today I am going to confess mine: “It’s just a movie.” ... No. It’s not. And personally, any movie worth its salt is not just a movie ...

The meaning of Mongol

Uuganaa Ramsay, Ouch (BBC News), 23rd November 2014

Uuganaa Ramsay was raised in Mongolia but now lives in Scotland. She has recently been exploring why her ethnicity is linked to Down's syndrome, a condition diagnosed in her son ...

Journal of Mental Health for Children and Adolescents with Intellectual and Developmental Disabilities: An Educational Resource, Vol 5, Issue 2, October-November 2014, published by the School-Link Initiative, Childrens Hospital at Westmead.
NDIS Newsletter, November 2014 issue

Poster from Enable Scotland's recently launched anti-bullying campaign:

Weekend reading and viewing: 22nd -23rd November 2014

Finding Joy Each Day ~ Each Step ~ Each Dance

The Happy Soul Project, 7th February, 2013
... but we got caught up in a group of people- From what seemed like out of nowhere, a group of 20+ adults with Down syndrome filled the park...All of a sudden that park & that moment was where Craig and I needed to be...

The band started to play, I saw a few look at each other & wink with delight & then dancing, beautiful dancing right in the park with nothing but utter joy on their faces...I was frozen in time for a few moments- Just watching it all, trying to get close, talking to a few about Pip, hoping for an invite to dance with them...

Growing up with a sibling with Down syndrome

Sipping Lemonade, 20th November 2014

... when Kate was first born with Down syndrome, I wasn’t sure what our family would look like or how it would continue to grow. Kate had a big brother — but would we have more children? If we could, should we? I had always dreamed of having a big family — would a Down syndrome diagnosis affect that? All families have many unique, personal reasons for their family size, would having a child with special needs affect ours? What would those sibling relationships look like? ...

Janet Carr: They used to say ‘they’re never likely to walk or talk’

Saba Salman, The Guardian (UK), 19th November 2014

Pioneering psychologist on her 50-year study of people with Down’s syndrome that became a lifelong commitment to changing attitudes ...

How perfect baby Gammy opened my eyes to choice

Claire Harvey, The Sunday Telegraph, 16th November 2014
... Seeing Gammy ...  an Australian child born to a surrogate in Thailand _ being lavished with love by his birth mother made me grasp, for the first time in a really visceral way, why the parents of children with Down Syndrome say their kids are a gift. It is embarrassing to admit this, but the footage of Gammy was the first time I’d really understood the obvious truth: that Down Syndrome children are just children ... I do know this: it’s too late to turn back this tide of choice. The information is there, and it’s not going away. Many of our ancient burdens have been lifted. Somehow, we have to learn how to deal with new ones.

One of those days

Orange Juice Flavour Sky, 14th November 2014
... Sure enough, the figure walking up the path at the side of a busy road, was Emily. Alone. All alone. Emily alone! There’s nobody with her! Hello!!!

In that moment my world seemed to freeze. My mouth went dry. My heart began to race. We were already 50 yards passed…..now a hundred. I couldn’t just stop, we were on a busy road with traffic right behind ...

Sometimes I Forget….

Hand Me Downs, 5th October 2014

... Sometimes I forget, and that makes it even harder when someone reminds me in a not so kind way….Like the cashier that gave me sad eyes and spit poison in a whisper,

“I bet you wish you had known before he came out. You know they have a test for that now…”

Shock, horror, hurt and fury coursed through my body. I considered jerking her over the register and beating her senseless. I looked her up and down, I could take her ...

Dying with dignity: let's focus more on the latter

Stella Young, The Drum (ABC), 14th November 2014

... as someone who has had more than their fair share of contact with the medical profession over the years, I can assure you that this experience was not an isolated one for me.

And so when people ask me why I am opposed to legalising assisted suicide, this is what I tell them: The medical industrial complex has an inaccurate, but incredibly powerful, view on my life. Disability is often framed, in medical terms, as the ultimate disaster and certainly as a deficit ...

... and a little bit of Rudely Interrupted, Close my Eyes, from 2010:

• Lyrics and free download

Weekend reading and viewing: 15th - 16th November 2014

Down Syndrome Australia has some brilliant photos and results on its Facebook page from the 7th World Down Syndrome Swimming Championship in Mexico, that wraps up 15th November. Send one last Herogram, via Down Syndrome Swimming Australia.

It’s not the 60s anymore…it’s time to update the advice given to parents about Down syndrome
Leticia Keighley, Embracing Wade, 13th November 2014
... It’s not ok to tell parents that their child will never walk, talk or learn anything. Mainly because we know it is not true for the vast majority of people with Down syndrome, but also because it’s not ok to set parents on this path with dangerously low expectations of what their kids are capable of. No one can guarantee any child’s future but they have a much better shot at a bright one if people invest in and nurture their talents instead of expecting absolutely nothing from them from the day they are born ...

Thinking about College - We can do this

David Perry, How Did We Get Into This Mess? 11th November 2014

I am a college professor. We have a college savings fund for my daughter, principally funded by parents so far, though we're beginning to be able to contribute too. We do not have a college savings fund for my son, because he has Down syndrome, and we never thought that college was a reasonable option. We were wrong ...

Seeing the light: One mother’s story of raising a child with Down syndrome

Melinda Carstensen, Fox News, 6th November 2014

... The biggest lesson LeVeque has learned from her son is to accept others for who they are— and to not try to change them, rework them, or fix them ...

Sam & Mattie's Teen Zombie Movie + Making-Of Documentary!
Two young men with Down syndrome are planning to make a movie, and are using social media to organise funding and support - they have passed their minimum fundraising totla, but you can still pledge support over the next five days.

• Media story about the campaign

Weekend reading and viewing 8th - 9th November 2014

The Cradle Will Fall
Sergey Chernov Transitions Online, 4 November 2014
In Russia, parents of babies with developmental disabilities face pressure from both society and the medical establishment to abandon their children at birth.

DREAMS to Reality
D.R.E.A.M. Partnership, 27th August 2014

Clinton Township resident, Michelle Purri, receives national award

The Hunterdon County Democrat, 29th October 2014
Michelle Purri of Clinton Township is on a roll. Earlier this month the 22-year-old resident of Hunterdon County received the Melissa Riggio Voices Award from the National Down Syndrome Society and the Riggio family, founders of Barnes & Noble. The award is given annually to someone with Down syndrome who the family deems best exemplifies the spirit and outlook on life of Melissa Riggio, who died in 2008.

Purri accepted the award at a luncheon in New York City where she spoke before 250 attendees, telling them, "If you dream it and believe in yourself, all things are possible." ...

BRIGHT SIDE: Megan Sutton opens up world of dance for kids with special needs
Simon Walker, Newcastle Herald, 3rd November 2014

Fired by personal loss and the desire to give everyone a fair go, dance teacher and choreographer Megan Sutton has set up a dance school devoted entirely to kids with special needs ...

The beautiful dancers with Down syndrome

Australian Women's Weekly, November 2014

Short excerpt from a much longer article in the print and iPad editions.

Dr Janet Carr honoured at the House of Lords

British Pychological Society, 31st October 2014
... Dr Carr’s unique study has been generating findings of importance to the families and care services as well as to the scientific community. There is unlikely to be any comparable study of this special group of people from a psychological perspective. Her research was initiated by the Psychiatric Genetics Research Unit of the Medical Research Council, based in the early 1960s, at the London Institute of Psychiatry. It’s aim was to establish the educational requirements of the local population of children with Down’s syndrome ...

I Won't Pretend That Disability Simulation Works

Emily Ladau, Huffington Post (The Blog), 5th November 2014
Activities meant to simulate the experience of disability are so often lauded as moving, powerful, eye-opening experiences. With just a few hours in a wheelchair, wearing earplugs, or wearing a blindfold, people supposedly gain a deeper understanding of what life with a disability truly entails. I, for one, don't buy it ...

Parents with learning difficulties awarded £12,000 as judge rules Leicester City Council breached their ‘basic human rights’ by taking their baby away
PA_Warzynski, Leicester Mercury, 29th October 2014
A couple with learning difficulties who were separated from their baby daughter for more than a year have won £12,000 in compensation after a judge ruled Leicester City Council had violated their basic human rights ...

Team Inverell - Scrapheap Adventure Ride 2014

Team Inverell's float in a local parade celebrated their enthusiastic and 

highly successful participation in this year's Scrapheap Adventure Ride, 

in September.  They are already preparing for next year's adventure.  

Thank you for allowing us to share your Facebook photos, and thank you Inverell.

Weekend reading and viewing 1st - 2nd November 2014

His Eyes, Her Voice
Dave Hingsburger, Rolling Around in My Head, 26th October 2014
... The baby grinned at me and I said to her parents, "What a beautiful kid you've got there." I meant it. They knew it. As we passed them I caught the little girl's father's eye. He looked at me with ...

My Kid Does It Too
Ellen Stumbo, Finding Beauty in My Brokenness, 26th October 2014
It happens in the life of almost every special needs mom, at some point we share a concern with a friend over what our child is doing – or not doing – and we’re met with the well intentioned, “Don’t worry about it, my kid does it too!” Except that, well, their kid doesn’t have a disability, so it really isn’t the same ...

It's not about you
Kerre McIvor, New Zealand Women's Weekly, 12th September 2014
... I sidled over and said, “All right, lovely to hear from you, but we’re going to have to wrap things up now.” Our impromptu speaker turned to me and said sharply, “No. You be quiet. This isn’t about you. It’s about me.” ...

The next two links are responses to a challenging article published recently by the UK Daily Mail:

What One Man With Down Syndrome Wants You to Understand

Mardra Sikora, Huffington Post, 30th October 2014
... But then he surprised me, as he has before and doubtless will again, when he intuitively knew more about the situation than I shared. He looked across the table and said, in his way, "Maken understand." ... So I asked, "Maken understand what?"

"Love," he said. Yes, friends, true story. His answer to the situation.

This is Stephen. His mother wishes he’d been aborted.
Dragana (Dianne) Draganavic, Kids Spot,  24th October 2014
... Like many parents of children with Down syndrome, Sydney mum Dianne Draganovich read Gillian’s story with dismay. Her own daughter Bella has Down syndrome, and she says it’s stories like this that add to community perception that people with Down syndrome are a ‘problem’ or unwanted or unlovable. Nothing, she says, could be further from her truth and the truth of most people she knows ...

Dance like no one's watching

The Australian Women's Weekly, November 2014

A 5 page spread about Melbourne dance group, e.Motion21 in both print and iPad version (not yet available online)

The Specials Vs The Zombies
The Specials get into the Halloween act in this short video clip.

Weekend reading and viewing: 25th-26th October 2014

Life is therapy too …

Leticia Keighley, Embracing Wade, 22nd October 2014

I’d love to be that kind of mum you see online, who has shelves full of interesting things that enliven and inspire their kids ... but I’m not.

10 things I've learnt about having a child with Down's Syndrome

Ellen Wallwork, parentdish, 21st October 2014

Steve Palmer's 12-year-old son Stanley has Down's Syndrome ... "We're not looking to inspire, we're just getting on with things. Being disabled doesn't automatically make you inspiring and we didn't ask for that label, so I wish people wouldn't impose it on us." ...

Sons and mothers 
Documentary on ABC iView until 2nd November 2014
'This film will leave you rethinking what it means to be disabled, a parent, a son and wanting to know where and when you can see the amazing stage show documented in this fantastic film.'

... 'Sons and Mothers' is an intimate portrait of a group of men who meet once a week as part of the Men’s Ensemble theatre troupe. They embark on a year-long creative process to create a theatrical love letter to their mothers and as they reveal themselves things get complicated and not everyone makes it to opening night ...

Caregver burnout

Beth Ryan, Love Explosions, 15th october 2014
... The voices of happy families get drowned out by the voices of those in the sexy depths of despair. As such, a real disservice is done to Autistic people and their families because they don’t get to see that happiness is very possibly well within reach ...

The Right Foot Workshops

Dirty Feet, September 2014

A beautiful album of 55 photographs taken during the Right Foot Workshops (dance) at Bankstown in September.

Accessible Arts Newsletter, October 2014 issue

The 2014 Special Olympics National Games closing ceremony takes place this evening in Melbourne. Follow the action on Facebook:

• Special Olympics National Games 2014 on Facebook
• Special Olympics NSW on Facebook

Weekend reading and viewing: 18th - 19th October 2014

Into our 2nd decade of Down syndrome awareness walks
Mark Leach, Down Syndrome Pre-natal Testing, 13th October 2014
... At that first walk, I remember watching the older children and particularly the adults. I wondered if that was what Juliet would be like when she got to those ages. But, over the years, instead of watching these older children and seeing them as possible examples of what Juliet may be like, I’ve instead gotten to know them ... There is no set path, and there is no set outcome for Juliet. Instead, what attending the Walk has shown me over the years is that all these individuals with Down syndrome are just that: individuals. And, they each have their own lives that you’ll discover for yourself if you take the time to get to know them.

Why I'm not a good hero
Leah Thompson, Our Cora Bean, 13th October 2014
One of the most common sentiments you'll hear from parents of children with special needs is that we are not saints or heros. I'm sure that those labels sound like compliments. I'm sure those of you on the outside would think we'd be proud to be seen in that light. But the truth of it is, we don't feel like saints or heros ..

Citizenship

Dave Hingsburger, Rolling Around in My Head, 16th October 2014

... what I thought about, was that everything that was there for me, every single adaption, from the ramp to the building, to the door openers, to the disability signage, to the use of plain language, to the adapted booth, to the quick and ready assistance to move a table - every single thing represented a victory, represented a battle won for access and equal citizenship for people with disabilities. I was there voting because others fought, not for the right to vote but for the right to be able to vote - to access the electoral process ...

Why Taco Bell Threw This Boy With Down Syndrome a Seriously Awesome Party

Melissa McGlenser, The Mighty, 16th October 2014
It all started last year when Joe’s education assistant, Louise Sartor, helped him prepare a speech for his school’s annual public speaking event. Joe decided to research the history of his favorite dish ...

Bismarck parents buy coffee house for son’s future

Karee Mcgee, The Bismarck Tribune, 13th October 2013
... When Cristian McMerty, 13, was born with Down syndrome, the McMertys wanted to find a way for their son to succeed in life instead of being limited.

“You can set the bar low and reach it, but that’s a lot worse than setting the bar high and giving a person the chance to reach it,” ...

Judge: Lawsuit in police death of man with Down Syndrome can move forward

Peter Hermann, Washington Post, 16th October 2014
A federal judge in Maryland ruled Thursday that a wrongful-death lawsuit against three Frederick County sheriff’s deputies can move forward over claims of gross negligence for forcibly removing a young man with Down syndrome from a movie theater.

Robert Ethan Saylor died, which generated outrage among parents of children with Down syndrome and advocacy groups across the country. U.S. District Judge William M. Nickerson was just as scathing, writing in his 54-page ruling that “a man died over the cost of a movie ticket.” ...

2014 Special Olympics National Games
ABC TV, 14th October 2014



The 2014 National Special Olympics National Games start on Monday (20th October) in Melbourne - good luck to all the competitors, (especially all the NSW athletes with Down syndrome, of course!)

Weekend reading and viewing: 11th - 12th October 2014

Yes, you could do it
Ellen Stumbo, Finding Beauty in My Brokenness, 7th October 2013
I cannot count how many times I’ve heard people say, “I could never do it,” when referring to raising children with disabilities. It’s funny, because they often say this when referencing my life, as if my children were difficult, too much work – and although I know full well they don’t mean it – it suggests my children are less lovable. But here is the thing: Yes, you could do it! ...

How a Magazine Article Convinced a Former Ballet Dancer to Teach People With Down Syndrome

Megan Griffo, The Mighty, 8th Ocotber 2014
Colleen Perry was reading a People magazine article in February 2009 when a chill shot up and down her spine and she decided to change her life’s course. The piece discussed an adaptive dance program within Boston Ballet designed for people Down syndrome and autism. Perry, a former ballet dancer and marriage/family therapist based in Los Angeles, heard a little voice in her head as she read ...

Choosing Family: a mother’s reflection on having more children after her first baby was born with Down syndrome
Guest post, Mumma Love, 4th October 2014
... The therapy wheel has definitely taken a beating and the mother guilt is piling up nicely beside my bed. As life with three small children barrels us along there is never enough time. As I lose it again and again about speech homework not done, PT practice forgotten, the research I need to do on supplementation or the lack of one on one time for the other two, my husband brings me back to earth ...

To Any Parent Nervous About Having a Baby With Down Syndrome, This Is for You

Melissa McGlensey, The Mighty, 4th October 2014
Carolyn McDiarmid, 44, from Victoria, Australia, grew up across the street from the family of a little girl with Down syndrome. She later had a close friend in nursing school in Melbourne who had a child, named Harvey, with an extra chromosome. None of this, however, prepared her for the shock of finding out that the child she was carrying also had Down syndrome ...

A reading and language intervention for children with Down syndrome

Down Syndrome Education International, 2nd October 2014
News, insights and tips about DSE's reading and language intervention (RLI) - recording of the webinar held on 2nd October 2014.  Presentation slides are available as a.pdf file.

Disability simulations should be left in the 90s

Stella Young, The Drum, 25th September 2014

Allies should be strengthening the voice of people with disability by speaking up alongside us, not simulating disability in a tokenistic fashion and raising money for charities, writes Stella Young ...

A very proud new aunty ...

Weekend reading and viewing: 4th - 5th October 2014

It's their loss, 
Leticia Keighley, Embracing Wade, 30th September 2014
... I don’t set out of my house on a “hearts and minds” mission every time I go shopping but if the opportunity arises, I like to take advantage of it. So, even though I know I shouldn’t, I can’t help feeling a little disappointed when Wade doesn’t act like Wade when I want him to ...

Why I Let My Daughter Rearrange the Chairs in the Waiting Room

Samantha Gill, The Mighty, 28th September 2014

... the little boy came up to me and shook my hand and hugged me and started getting very emotional and talking very fast. The mom became very embarrassed and started to apologize. I was so confused —not because of what the boy was doing but what the mom was doing. Why was she apologizing to me? We are at the behavioral doctor’s office. Was she so conditioned to apologize that she forgot? ...

When a pair of jeans can change a life
Laura Hampson, Mama Mia, 28th September 2014
... Karen’s daughter then challenged her to create a range that would cater to the specific needs of an individual with Down Syndrome; a challenge she relished ...

How Not To Compliment My Son's Appearance

Lisa Eicher, Huffington Post, 26th September 2014
I can't count the number of times I have been told that Archie "hardly even looks like he has Down syndrome." ... But here's the thing: Telling me that my child who has Down syndrome doesn't look like he has it "that much," or in whatever arrangement of words one can phrase that thought, is not a compliment ...

I Won't Let My Daughter With Down Syndrome Be Defined By A 'List'

Deanna Smith, Huffington Post (blog), 25th September 2014
When my daughter was diagnosed with Down syndrome, I was given a list. A list of potential features and problems to expect. This list is cold, emotionless and almost comes across as grotesque if you are reading it with fear already in your heart ... It's as if someone was told to describe Christmas and they said that it might include an evergreen tree and cold weather ...

All Down's people deserve dignity
Peter Scott, The Scotsman, 25th September 2014
Insensitivity, ignorance and then bac­ktracking does precious little to help people in our society with learning difficulties ...

How editors and journalists can produce better and fairer reporting on people with disability

Shawn Burns, World News Publishing Focus, 8th September 2014

Partnerships between advocacy groups and the mainstream media are a hallmark of the rise of Advocacy Journalism as a conduit for meaningful social change. And some of the most prominent collaborations seeking to facilitate self-representation for minorities have involved people with disability (PWD). However, as Shawn Burns reports, there's still much work for editors and journalists to do in this area. 
(This link was also posted in People with Down syndrome in the media on 30th September 2014)

Reposting this version of 'Happy' just because it's a the long weekend here, and spring:

Weekend reading and viewing: 27th - 28th September 2014

For Barry Trotz and wife, transition to Washington centers around son with Down syndrome

Alex Pruitt, The Washington Post, 23rd September 2014

... at first it seemed ideal: grassy parks down the block, middle school within biking ... neighboring adults who invited them to an ice cream party and whose daughters knocked on the front door to invite Nolan to play kickball ... But summer soon ended. No more knocking, no more kickball. Then school started, and Nolan’s teacher was great, but a new environment with less individual attention led to acting out in class. At home, Nolan had grown quieter since the family completed its move in late August. Vocalizing his feelings had always been a struggle ...

Don't make excuses to exclude my child from your sport

Maureen Wallace, She Knows, 19th September 2014

... To be clear, I don't expect a ticker tape parade when I introduce my child with Down syndrome to an activity or organization. But I will always expect an equal level of interest that any other child receives — and I will always expect a mindset of willingness to try ...

Learning when (not) to talk to strangers about my child's disability

Mary Evelyn, What Do You Do Dear? 19th September 2014
... She didn’t speak another word and, since making a complete stranger feel guilty/foolish/uncomfortable wasn’t on my “to do” list for the day, I felt terrible. Smooth move, Self ...

The Big Day - Stacey and Ian
Pink Shoe Photography, 19th September 2014
A beautiful, professional portfolio ... While the couple faced their friends and family, the pastor took a moment to appreciate this special couple. He said that all Stacy and Ian wanted was to be married to one another. That it was their dream. He asked everyone to take a moment to appreciate the love in their lives and he encouraged them to hold it tight and dear. Most of all, he requested that they never take marriage for granted ...

Welcome to Italy - Benvenuti in Italia

Linda Smarto, National Association for Down Syndrome Newsletter (via the Adult Down Syndrome Clinic Blog), 17th September 2014
Are you familiar with “Welcome to Holland”? It was written in 1987 by Emily Perl Kingsley. I think it is a wonderful analogy about taking a long awaited trip and having a child with a disability. Although, I will admit, it has always been a little “bitter sweet” for me ...

What not to say
The Diary of a Not So Ordinary Boy, 26th June 2014
Oh, people put their foot in their mouths all the time, so, in the interests of harmony between us, and me not jumping on your head, or down your throat, here is my list of ‘Things What Not To Say To A Parent Of A Child With Learning Difficulties Like, Say, Down Syndrome’ ...

Disabled Children Aren’t Burdens — or Angels

This Ain't Living, 25th September 2014

In popular narratives, disabled children seem to be framed continually as either one of two things. They are either precious angels sent to Earth to teach us all a lesson, or they’re burdens dragging on the lives of their parents and family members, who are forced to make tremendous sacrifices for them. Neither is true, and both are incredibly harmful not just for disabled children, but also for the adults who they grow into ...

Weekend reading and viewing: 20th - 21st September 2014

• Follow the 2014 Scrapheap Adventure Ride in pictures this weekend 

11-Year-Old Makes Powerful Anti-Bullying Music Video for His Sister With Down Syndrome
Melissa McGlensey, The Mighty, 15th September 2014



... We live in a world where differences are all around us. Sometimes it's easy to get caught up in these differences, especially when we see them in the people that surround us everyday. MattyB believes that everyone deserves the same thing: love. It's not always popular to love someone and embrace their differences, especially when others make fun of them. But being a leader means standing up for what you believe in and choosing to do the right thing... even when it's not always popular ...

When I Found Out My Daughter Had Down Syndrome: What I Wish I Could Take Back

Tara McCallan, The Mighty, 13th September 2014

One thing I wish I could take back when I found out Pip has Down syndrome, is all the tears I cried… sobbed… wept… Yep, “wept” is the right word… over the relationship I thought Noal would have with his sister ...

Louisville actor with Down syndrome, 'Menschen' movie challenge stereotypes

Pam Mellkog, Times-Call News, 16th September 2014

"Is he handicapped?" the 8-year-old asked.
"Yes, he is," I said, pleasantly surprised by the child's perception and straightforward question.
"Well, you never know with those handicappers, you never know what they're gonna do," he said ...
7 Morning Sensory Tips for You and Your Child with Special Needs

Ilana Danneman, The Friendship Circle, 16th September 2014
... Here are a few tips to get those muscles moving and brain cells working right from the start of the day. These tips are written for your sensory seeking, sensory deprived or sensory sensitive kids, but feel free to try them out on yourself first ...

Flexible working conditions for carers needed to meet ageing challenges

Carers Australia, 17th September 2014
 ... With an ageing population, becoming a carer-friendly workplace makes business sense. Providing flexible and supportive working conditions to enable employees to combine paid work with an unpaid caring role will ensure employers are able to hold onto experienced workers ...

Every Parent is an Advocate
Elly Sheller Rufer, Huffington Post (blog), 11th September 2014
... My goal, like that of most parents, has always been to ensure that my children have access to the best and most appropriate opportunities in life. What I have learned over three decades of working toward this goal is that the supports that are available to the parents of a "special" child differ dramatically from those that exist for a family with a "typically developing" child ...

What acceptance is not
Cynthia Kim, Musings of an Aspie, 17th September 2014
... We’re okay with all of it, just as it is.

How is that not giving up??? you may be wondering. How is that different from doing nothing?!

Because it’s not the finish line. It’s a starting point. From a place of acceptance, we can build coping strategies and learn new skills in a way that improves the quality of our life ...
(Not about Down syndrome, but the thoughts about acceptance are just as relevant).

Accessible Arts Newsletter, September 2014

Weekend reading and listening: 13th - 14th September 2014

Talking to kids about disability (and Voldemort)
What Do You Do Dear?, Mary Evelyn, 5th September 2014
... I looked behind me and watched his mother’s eyes widen with embarrassment as her face turned stop-sign red. She glared at her son, took him by the arm and mouthed angrily into his ear: “Don’t. Say. Anything.” ...

What Are You Going to Do When He Grows Up?

Mardra Sikora, Huffington Post, 9th September 2014

... here comes graduation day, barreling down like you never knew it was coming. The two-minute warning bell and you're standing without your homework, without your research paper, without a map to class ...

Readers Protest ‘Hate Speech’ in Comments Section on Down Syndrome

Margaret Sullivan, The New York Times, 9th September 2014
.... Kari Wagner-Peck, whose son has Down syndrome, thinks those comments constitute a form of hate speech and should not have been posted ... I heard from many readers who echoed Ms. Wagner-Peck’s sentiments ...

Disability and Friendship

Simeon's Trail, 9th September 2014
... Instead of encouraging friendship, I introduced the concept of pity, ie, "it's hard for him to do things." By congratulating her for doing what came naturally (playing with a same-aged peer), I highlighted the difference and gave her superiority in the relationship by telling her he needs help ...

Breastfeeding Josee…Ten Tips For Breastfeeding A Baby With Down Syndrome

The Milk Meg, 7th September 2014

... I now want to share with you some of the trials and tribulations we encountered as we learnt the breastfeeding ‘dance’; I always like to think of breastfeeding in this way! It really is like two people learning a new dance together; it takes lots of practice and patience ...

9 Things People Don’t Get About Special Needs Parents

Ellen Seidman, Babble, 10th September 2014

... in most ways I am just like other parents (and in most ways, Max is very much like other kids ...

What a difference differences make (Audio file 17m 59s + transcript)
Jane Mersky Leder, PRX (Public Radio), 17th July 2014
An intimate portrait of three adults with intellectual disabilities and the producer's journey from uneasiness to acceptance and love ...

Dr Brian Chicione, Adult Down Syndrome Clinic: She interviewed three adults with an intellectual disability, two of whom have Down syndrome. Perhaps I can sum up her journey by saying that she learned acceptance by getting to know the three individuals she interviewed, spending time with them and listening to them.

The Spaces In Between

Samantha Connor, The Stringer, 24th August 2014

... Paid support workers won’t hug you, but they will take you to your day programme. Friends and family live in the same circle, and they will hug you as much as you want. He looked at me. ‘Why are they in circles?’

That’s the question that keeps coming up. Who else in the world has areas firmly delineated by ‘professional boundaries’ when it comes to your day to day life? How can you compartmentalise your whole life into little circles? ...

Weekend reading and viewing: 6th - 7th September 2014

How We Explained to Our Son That Down Syndrome Doesn’t Mean Something’s Wrong

John M Simmons, The Mighty, 4th September 2014
... “Mom, what happened to me?” he asked ... “What happened to me? What happened to Jack?” Amy was listening now. She asked him what he meant. “What happened to me? Was I in an accident? Did the car crash? Did somebody hurt Jack? What happened to me?”

How do you explain to your son that Down syndrome doesn’t mean something’s wrong?

Amy became wide awake. How do you answer a question like that? “Oh. You mean why it is hard for you to learn? Do you mean what happened to your brain?”

“Yes,” he responded. “What happened to Jack?” ...

Dear parent of typical children
Ellen Stumbo, Finding Beauty in My Brokenness, 2nd September 2014
... Sadly, the fear of disability is still out there, and dear parent of a typical child, you can help your child understand that disability is indeed a normal part of life – but you can only teach what you know.

If you are uncomfortable with disability and pull your children away from other kids with disabilities when they are playing together at the park, or at a party, or at the library, you are teaching your kids that children like mine are scary, repulsive, and people to stay away from ...

I'm a Third Generation Special Needs Mom
our three little birds, 3rd September 2014
... I thought, "wait a second... I'm a special needs parent!?" Ellie was already a couple months old and I never made the connection. But then I realized something pretty amazing. I had just joined the ranks of two other pioneer women in my family. My mom and my Grandma Hattie were also special needs mamas. And they were damn good at it ...

Sue Whiteman: The gift of dance...ability (includes 4 m video)
Catherine Marciniak, ABC Open, 27th August 2014
Sue Whiteman is what people today call an "integrated dance teacher".

It's a fancy title for what Sue has been doing for years and what comes naturally to her: giving people the gift of dance whether or not they have a disability ...

The clod delusion: why Richard Dawkins is wrong on this one

Peter FitzSimons, The Sydney Morning Herald, 29th August 2014

... in Federal Parliament on Wednesday afternoon, by Federal member Ewen Jones, who spoke with great warmth about a 40-year-old in his electorate last Saturday night was made a life member of Townsville's Brothers Rugby Club, Frank Fanning ...

Op-ed: How One Formerly Ableist Lesbian Mother Opened Her Eyes

Keston Ott-Dahl, Advocate.com, 25th August 2014

What happens when a baby being carried by a surrogate is diagnosed with a disability? LGBT parents should think carefully about the answer ...

How to protect your child with special needs from sexual abuse

Maureen Wallace, She Knows, 30th August 2014
Sexual abuse is every parent's nightmare, exceeded only by the idea of losing a child completely. The vulnerability of children with special needs makes them the ideal predator target ...

A classic, from a Dad -

Two Parenting Fears That Never Came True

Rick Smith, Noah's Dad, 15th September, 2011

When Noah was born one my many fears was that my wife and I were left to this world of Down syndrome all alone ... Another fear I had was that our family was going to be so much different than a typical family.

Weekend reading and viewing: 30th - 31st August 2014

The Truth About Down Syndrome

Jamie Edgin and Fabian Fernandez, New York Times, 28th August 2014

... Mr. Dawkins’s argument is flawed. Not because his moral reasoning is wrong, necessarily (that is a question for another day), but because his understanding of the facts is mistaken. Recent research indicates that individuals with Down syndrome can experience more happiness and potential for success than Mr. Dawkins seems to appreciate ...

An Awesome Life Lesson From My Son With Down Syndrome: Friends and New Beginnings

John Simmons, Huffington Post (The Blog), 26th August 2014

... Perhaps I would have no more anxieties with new beginnings than my son experiences, if I looked at them in the same light that he does. If I loved people like Jack does; if I valued friendship more than anything else someone could give me; if my ventures were solidly based on people and relationships rather than things; new beginnings, for me, would be different ...

Down Syndrome and Parenting: The Cold Current of Doubt

Jisun Lee, Kimchi Latkes, 22nd August 2014

It is hard sometimes when it feels like the world is telling you that your kid is more wrong than right, not to let some of it seep in. 

If you only know one thing about Down syndrome, know this 

Sipping Lemonade, 21st Auust 2014

“You know, Kate and me love rolling around on the ground in circles together. Kate is really good at rolling. And you know how my other sisters are scared to hide under the blankets and play tent? Well, Kate is never scared to hide under the blankets.” I smiled at the sweet things 5-year-olds value about their sisters.

Then he said, “Down syndrome makes her really good at some things” ...

New Concordia University program aims to help those with cognitive disabilities

Robert Gebelhoff, Milwaukee Wisconsin Sentinel Journal, 21st August 2014
Eight students with cognitive disabilities had the chance Thursday afternoon to do something few of their peers get to do: move into a college dorm.

That's because Concordia University Wisconsin, in partnership with Bethesda College of Applied Learning, will be housing the students through a new program aimed at developing independent living among adults with intellectual disabilities ...

Three-year-old Alice to star in Down's syndrome film after Plymouth student mum's photography project
Plymouth Herald, 21st August 2014
A mum has won an international award for telling the story of her relationship with her Down's syndrome daughter through photographs ... She embarked on the project after struggling to come to terms with the fact her daughter, Alice, was born with Down’s syndrome ...

Classic

On The Dignity of Risk
A Walk on the Happy Side, 20th January 2009
... Over protection can keep people from becoming all they could become.

Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try. Persons with special needs need these chances, too ...

Weekend reading: 23rd - 24th August 2014

The first two links are just a small sample of responses to Richard Dawkins (see previous post) - there will be more:

Dear Richard Dawkins, You Are Wrong

Hayley Goleniowska, Huffington Post, 21st August 2014
Richard Dawkins, atheist author, provocateur, scientist, you must by now be well aware of the furore over your comments yesterday. Comments that it was 'immoral' to bring a baby with Down's syndrome into the world if you have a choice.

'Abort it and try again', was your advice because it is the 'civilised' thing to do as 'they are foetuses, diagnosed before they have human feelings.'

As I watched the Twitter debate unfurl, you continued that you would not recommend abortion for individuals with Autism, say, as they 'contribute' to society, for they are 'enhanced', which, in your view those with Trisomy 21 are not. You even went so far as to say children with Down's syndrome 'suffer'.

Now hold your horses just one moment Mr Dawkins. I think perhaps you are confusing non-essentialist, humanist thinking with a loss of humanity here ...

The power of being wanted
Ginger Stickney, Green Ginger Tea, 20th August 2014
Every night I do something with Jude that I don't do with any of my other children. Every night as Jude falls into sleep, her beautiful lashes brushing her plumb cheeks, her sweet lips puckered out, I whisper into her tiny shell of an ear "You were wanted. Never ever forget that we wanted you." ...  and I hope that someday she will whisper to herself "I was wanted. My parents wanted me. My siblings wanted me. My friends wanted me. The world wants me."

Young people with disabilities campaign for the right to learn

Andy Merriman, The Guardian, 19th August 2014

In June, my daughter attended a demonstration outside the houses of parliament. Sarah, who has Down's syndrome, travelled by coach from Somerset with fellow students and staff from her college, where she met 80 other young people to launch a campaign highlighting the need for educational equality for people with disabilities ...

Andy Merriman wrote 'A Minor Adjustment' in 1999, a popular book in our library collection.

What is the magic sauce for unlocking your child’s full potential?

Sipping Lemonade, 10th October 2013

... this eagerness to do, give, provide, find, research, etc. gave me a bit of anxiety early on. How much was enough? Was there ever too much? Were the therapists I was using the BEST I could find? Were the books I was reading the BEST I could read? What was the magic sauce? I needed to know ... It is the unconditional love that tells your child: you are worth the world not when/if you accomplish x, y, z—but because you are you. And you are enough ...

Weekend reading and viewing: 16th - 17th August 2014

My: 24 Sarai / Harry
ABC iView, until 10th September 2014 (broadcast 10th August)
Harry and Sarai. Harry's baby sister Millie was diagnosed with Down syndrome after arriving prematurely and Sarai came face to face with the very real possibility of losing her home and everything in it.

My son has Down's syndrome and I wouldn't swap a thing about him'
Caroline White, Ouch! (BBC), 13th August 2014
I have been saddened by the recent coverage of baby Gammy, a child with Down's syndrome born to a Thai surrogate. It shocked me that we still attach a value to people's lives. We are talking about twin babies here. Twins, who shared a womb for nine months, share the same birthday and share the same genetic make-up. Yet the way they have been treated has been very different ...

Josie's Art
Josie is an emerging artist, from Sydney

Down syndrome: A diagnosis story

Melissa Pelletier, Connecticut Working Moms, 9th August 2014

Just a few weeks ago, my girl turned four. And every year her birthday comes around, my brain goes back to the day she broke free from the mothership, the day she was born. We’d been so excited to meet her and finally reveal her name to our friends and family. Little did we know, she had a little secret of her own: a 47th chromosome, a tiny little extra #21 ...

Prejudice challenged by joy
Dave Hingsburger, Rolling Around in My Head, 9th August 2014
... I wished for just a second that all those who set editorial policy for the language used to present disability in the media were there. I wished that they'd take off the blinkers of prejudice and actually see what was in front of them.

Like the guy with Down Syndrome who could compete in any dancing contest any where in the world. He lights up the dance floor, his natural grace and his natural sense of rhythm makes it impossible to watch any but him. It would be hard pressed to see him, meet him and then write about people who 'suffer from Down Syndrome' ...

The Right Foot (video: 2m 36s)
Dirty Feet, June 2014
The Right Foot offers contemporary dance workshops to young people with and without disability. Sydney’s DirtyFeet is passionate about providing free opportunities for young people to improve health and wellbeing, build confidence and connect with Sydney’s professional dance artists.

Gabrielle review: Beautiful drama seamlessly combines disability and music
Paul Bynes, Sydney Morning Herald, 11th June 2014
This Canadian film treads a fine line with its mix of intellectually challenged actors and more traditional performers, but it does so to beautiful effect.

French, with subtitles. This film has had limited cinema release, but has been released on DVD, and is currently an in-flight entertainment option on some QANTAS flights. Look out for it on DVD, in local cinemas or on TV - and please let us know if you see it scheduled.

Dr. Lauren Lindstrom explores the inexorable link between disability and poverty

Sage Connections, 5th August 2014
... Researchers found that high parental expectations, work experiences, career-technical education, and postsecondary education were all strategies that expand employment opportunities and may serve as pathways out of poverty ...

Down Syndrome Australia media links
Down Syndrome Australia has posted links to media about the TV series The Dreamhouse, and about Baby Gammy and the Down Syndrome Australia community here.