2014 events

Image: Pixabay.com

This year, we will maintain a single 2014 Events page on the blog, with a permanent link just under the banner at the top of this page, so that you check in easily.

Direct links to individual events hosted by other organisations will be posted there as information is received, and the addition flagged as a short blog post set out like these most recent entries:

Getting Started and Get More Skills Workshops
My Choice Matters
4th - 28th February 2014 - NSW South Coast/Inner West/Southern Sydney

Outing Disability - photographic exhibition
Family Planning NSW
6th February - 1st March 2014 - Chippendale

Full details of Down Syndrome NSW events will continue to be posted as individual blog posts, with a link on the events page.

Good health: fitness recommendation from the Adult Down Syndrome Clinic (22 years old this week!)

cricket might be 'our' game, but we can do baseball activities for fitness, can't we?

Free until 31st January

Here's an iPad fitness app recommendation from the experts at the Adult Down Syndrome Clinic in Chicago.

Congratulations to the Adult Down Syndrome Clinic on the 22nd anniversary of your opening, on 17th January. That's a lot of experience working with adults with Down syndrome, and a wonderful contribution to the community, worldwide.

Great resources about relationships: a newsletter, a video and a Facebook page

Relationsips and Private Stuff newsletter online
This issue includes information about

• Relationships and happiness
• A Healthy Living Checklist
• A movie recommendation
• A Relationships Skills workshop on 1st February in Burwood
• Two dates for Date-able Dances in February

Liz Dore, from Relationship and Private Stuff is interviewed in this video, available online, about the need for relationships, as is a young gay man with a disability:



Relationsips and Private Stuff newsletter online
This issue includes information about

• Relationships and happiness
• A Healthy Living Checklist
• A movie recommendation
• A Relationships Skills workshop on 1st February in Burwood
• Two dates for Date-able Dances in February

Relationships and Private Stuff is also on Facebook, here

We're back at work today ...

It is not too late to order copies of our 2014 Down Syndrome NSW calendar, if you are quick.  Our office re-opens after the summer break, so now is a good time to send in your order.

As it has been for the past 15 years, this year's calendar was produced by professional photographer and Down Syndrome NSW member, Craig Peihopa (Timeline), with photos contributed by DS NSW members.

Calendars are $16.50 each, including GST, postage and handling.

• Download and print an order form for our 2014 Calendar here

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

The Girl with Down Syndrome
Michael Bailey, 1998 - reposted as a Facebook note, 12th January 2014
... A statue of a young girl with Down syndrome.The features unmistakable over the millennia and smiling happily and shyly at the artist. The rendering clearly not the work of a simple artisan but rather of an accomplished sculptor and one who clearly loved this little girl. Everything about her done to flatter and highlight her features and show her calm loving and childish gaze ...

If you cannot access this piece on Facebook, click here to read the full text of the article.

The 1000 miles of Luca (video, 9 m)

Pablo Poncini, TWBA, 15th January 2014
... “And then little by little the Down syndrome disappeared and Luca appeared” ...

Norm Parker saved my life

Matt Bowen, The Gazette, 13th January 2014 (republished from 2011)
... Not many fathers have to fall back in love with their kids. I did. And I am man enough to admit that I struggled with Matthew’s diagnosis to a point where I didn’t know what to do. Norm changed that ...

Down syndrome? Maybe she'll go to the moon

Bret Bowerman, CNN, 14th January 2014
... Recently, we asked Ellie's older brother, "Do you remember what it means for Ellie to have Down syndrome?" "Yes," he answered. "It means she can go to the moon. But it's not fair, why does Ellie get the extra 'chrome?'" ...

Father's Beautiful Journey With Son Who Has Down Syndrome Will Make Your Heart Soar

Ron Dicker, The Huffington Post - Parents, 14th January 2014

... "Little by little, the Down syndrome disappeared and Luca appeared," the father recounts tenderly in the (video) clip (that accompanies the story)...

Why Does Our Culture Celebrate Down Syndrome?
Amy Julia Becker, Thin Places, 13th January 2014

... the “two stories” of Down syndrome. One story is a story of eradication–an increasing number of women who have access to technology for prenatal diagnosis of Down syndrome who then choose to terminate. The other story is one of inclusion–increasing supports for individuals with Down syndrome and their families at school, through medical advances, and in the workplace ...

Using whatever helps for communication
Aileen Ryan,  Key Word Signing and Proloquo2Go, 17th January 2014
... Sign language was very needed (by Elysha) and the sad point was that we had to fight for it every step of the way once Elysha reached school age. Why did we have to fight so hard? Because she wasn't Deaf enough and the  (NSW) Department of Education don't take into consideration the need for sign language for children with speech and/or developmental delay (beyond the very very basics) ...

10 Things The World Can Learn From People With Disabilities

Tiffany Carlson, Huff Post Impact, 10th January 2014
No matter the type of person, there are lessons to be learned from them. People with disabilities are especially influential, as our hardships in life aren't easily forgotten. We go through every day with determination and strength, which many people are bowled over by, with many secretly wondering if they could do the same thing.

People with a disabilities learn so much throughout their lives; life lessons that able-bodied people rarely get to experience ...

Employment and Disability: a complex problem with no simple solution
Dr George Taleporos, Ramp Up 13th January 2014
Workforce participation of people with disability has been in the spotlight recently, with the Australian government announcing a review of the Disability Support Pension. Dr George Taleporos explores the issues and looks into some major government and business reforms to increase employment opportunities for people with disabilities ...

The Arc and UCP React to Offensive Language to People with Disabilities in 'The Wolf of Wall Street'
The ARC, 13th January 2014
The Arc and United Cerebral Palsy released the following statement in response to the use of the r-word and the offensive depiction of cerebral palsy in the new film The Wolf of Wall Street ...

National Senate inquiry into speech pathology

Do you have concerns, queries or suggestions about the provision of speech pathology services to people with Down syndrome in Australia?  Have you had good experiences, or not so good experiences in seeking speech pathology services?

The Australian Senate Community Affairs Committee has announced an inquiry into the ...

Prevalence of different types of speech, language and communication disorders and speech pathology services in Australia - visit the inquiry's home page for details about making a submission  

• Submissions should be received by 21 February 2014. 
• The reporting date is 27 March 2014.

Added 24th January 2014:

Down Syndrome Australia is developing a submission to the Australian Senate Committee on Community Affairs inquiry into communication disorders and speech pathology  services in Australia. 

We are seeking information from people with  Down syndrome and their families on their experiences regarding speech pathology services. We would particularly like to hear  about access issues, gaps in information and services, inequities and availability of quality supports. This includes information on any  specific programs or service models that have worked well.

Members are encouraged to complete this survey to provide information for use in the Down Syndrome Australia submission.  

Please note that you are also very welcome to make your  own submission to the inquiry - see the Down Syndrome Australia website for further information.

The submission is due on 21 February but we would appreciate responses asap and at least by 7th February.

Good health: a family's 'Heart Tale'

Advances in the treatment and management of congenital heart disease have been very important for children with Down syndrome, in whom the incidence of congenital heart disease is around 50% - much higher than in the population as a whole.  This is a well told story about a child with congenital heart disease growing into healthy adolescence, a prenatal diagnosis and the impact of seeing other people with Down syndrome doing the most ordinary of things:

Heart Tale
Amy Dietrich Hernandez, Concave Bed, Concave Life, 14th January 2014
... We sat across the desk from my normally jovial OB and heard the words "heart problems" and "closely associated with Down syndrome" for the first time. He looked a bit grim and was apologetic almost to the point of tears. I was trying to wrap my brain around what Down syndrome had to do with my baby's heart. Of course, I would learn that Down syndrome and heart issues were very closely linked, but until that moment I had lived in a bubble of blissful ignorance ...

News and commentary on the NDIS (14)

Dates and venues for NDIS Community Forums - Hunter region, February 2013
You are invited to:

• Hear detailed information about the National Disability Insurance Scheme
• Meet members of your local National Disability Insurance Agency team
• Learn about becoming involved with the scheme
• Ask questions

New National Standards for Disability Services endorsed
Department of Social Services, 20th December 2013

At the 18 December meeting of the Standing Council on Disability Reform ministers from all jurisdictions endorsed the revised National Standards for Disability Services.  These new standards are seen as a transitional reform enabling nationally consistent quality standards to apply for the disability services sector. They have a greater focus on person centred approaches and promote choice and control by people with disability. These are considered critical under the National Disability Insurance Scheme ...

Disability funding is no charity - it's an investment
Elizabeth Manning, The Conversation, 19th December 2013
... Aside from the fact that the NDIS is set up to provide only “reasonable and necessary” services, Hockey and Newman are missing the bigger picture: investment in disability support now will deliver savings later ...

Disability scheme changes Lynne's life
Rachel Baxendale, The Australian, 27th December 2013

For the first time in years, Lynne Foreman has been able to sleep in the same bed as her husband.
The Geelong great-grandmother has also received a pair of new shoes after a three-year wait, and a new wheelchair is on its way. The 57-year-old has become one of the first people to benefit from the National Disability Insurance Scheme ...

First news of new payment for people working in Australian Disability Enterprises, and PWD's response

Payment scheme for workers assessed under the Business Services Wage Assessment Tool

Joint Media Release: Senator The Hon Mitch Fifield,Assistant Minister for Social Services and The Hon Kevin Andrews MP, Minister for Social Services, 15th January 2014

The Australian Government will establish a payment scheme for supported employees with intellectual disability in Australian Disability Enterprises who previously had their wages assessed under the Business Service Wage Assessment Tool (BSWAT). 

The scheme will deliver certainty for these employees, their families and carers, as well as their employers, while the implications of the BSWAT court decisions are worked through. 

The establishment of the scheme follows the outcome of the recent Federal Court case brought by Mr Nojin and Mr Prior. 

Longer term, the Australian Government will develop a new wage assessment process.
The Australian Government’s priority is to ensure minimal disruption to the employment of these supported employees. 

We want to assure people with disability, their families and carers that the Australian Government remains committed to ensuring supported employees have certainty about their future employment within Australian Disability Enterprises. 

Employees with intellectual disability, who have worked in an Australian Disability Enterprise at the Grade 1 or 2 Level, have been paid a pro-rata wage assessed using the BSWAT and have experienced economic loss, will be eligable to register for the scheme from 1 July 2014. 

The Australian Government will provide more information about eligibility and other details as the scheme is developed. 

Further information on the scheme is available by calling 1800 880 052 or by visiting www.dss.gov.au/bswat/PaymentScheme. 

Further information for media can be found at www.dss.gov.au/bswat/media.

Further information released on 15th January 2014:

• Questions and Answers: BSWAT Payment Scheme
• Background information on BSWAT
• 
  

People with Disability Australia has responded to the announcement:

• Economic loss acknowledged but discrimination continues (15th January 2014)

... “While today’s announcement is a welcome recognition of the detrimental impact of the BSWAT wage assessment tool on the lives of people with intellectual disability, the scheme does not address the discriminatory impact of the continued use of the BSWAT in ADEs. Broad reform of this sector is urgently required to end use of the BSWAT, transition to the Supported Wage System, and to provide genuine employment support to people with disability to move in to open employment.”

“PWDA looks forward to a thorough consultation process on the need for these reforms, as well as on the details of the scheme. Any engagement process must include workers with disability in ADE’s and their representative organisations.” ... read the full text of PWD's response here

People with Down syndrome in art and on stage

A recent trawl through the internet for an image of an ancient sculpture of a child with Down syndrome was not successful, but Stefan Czapki's photo of Sam and Dickie, sculpted by Brian Alabaster, was a welcome 'find'.  Visit its Geograph UK page for more information about the work, and where you can see it.

© Copyright Stefan Czapski and licensed for reuse under
this Creative Commons Licence

The search also brought to mind this post from two years ago, about another beautiful work of art, this time in Paris.

Ups and Down's of Hamlet
Lorelei Reddin, Southern Daily Echo, 9th January 2014

A Hampshire theatre company will star in a BBC documentary later this month.

Growing Up Down’s is the incredible story of a group of young actors with Down’s Syndrome, who set out to create a touring production of Shakespeare’s Hamlet. Along the way, the play begins to blur with their real lives, leading to romance, rows and revelations ... read more here.

What we can expect from ADHC: Service Charter

You might recall that NSW Ageing, Disability and Home Care asked early in 2013 for input to the development of its first Service Charter. The finished Charter was released online last month:

'A new Ageing, Disability and Home Care (ADHC) Charter setting out the rights and expectations of people with disability and older people when they access supports and services has been released. 

The Service Charter outlines the standard of service people can expect from ADHC services and contains practical and easy-to-follow advice to ensure people get the most out of ADHC services. 

It provides an overview of the standard of service clients and their families can expect, how these standards are monitored, and what people can do if services do not meet expectations. 

The Charter is rights based and person centred, with an emphasis on people who receive ADHC-funded services. It aligns with the current focus on person-centred approaches, the transition to the National Disability Insurance Scheme and existing Stronger Together 2 and Ready Together commitments. 

The ADHC Service Charter is available in English, Easy English, and 27 languages other than English. 

The Charter is the first of its kind to be introduced within ADHC, and includes clear information about how to provide feedback and make a complaint about a breach of the Charter or any other issue. 

To view the charter visit the Service Charter page.'

Source: ADHC News, 6th January 2014 

Ethan Saylor's death - one year on

As the first anniversary of the death of Ethan Saylor in Maryland (USA), the local and wider response continues to unfold:

The legacy of Ethan Saylor
Jeremy Meyer, Denver Post, 11th January 2014
... The death of Ethan Saylor at the hands of sheriff's deputies who were trying to evict him from the theater he entered without a ticket has become a significant event for people in the disability community who push for equality and inclusion as a civil rights issue ... The incident should stand as a catalyst for change in a world already changing for people with disabilities ... A growing number of people with Down syndrome, autism, mental illness and other disabilities mean there will be more encounters in everyday life. First responders must learn to deal with someone who may not respond to crisis in a familiar way. Training is essential ...

The (US) National Down Syndrome Congress commented that Jeremy Meyer's editorial  is 'thoughtful and well written'.

After Ethan Saylor death, panel calls for better training on disabilitiesJessica Anderson, The Baltimore Sun, 9th January 2014
... "Current training of law enforcement personnel in Maryland on how best to interact with individuals with intellectual and developmental disabilities is not offered in every jurisdiction and what is provided is inconsistent and not comprehensive," the (Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities) wrote in a progress report released Thursday ... The group will create recommendations for policy and training law enforcement, and other first responders who regularly interact individuals with developmental disabilities ...

People with Down syndrome ... on both sides of the camera

Picture Me, Picture You
Loaisha and Emer Gillespie, 2008 - ongoing

Picture you, Picture me is a collaborative and explorative portrait project with my daughter Laoisha. Naturally evolving from my daughter’s curiosity and urge to stand on the other side of the camera, she has taken more and more control of the camera and of me ... The project and image content will evolve naturally in relation to Laoisha's ability to control the camera and the development of her visual language and will continue on until she no longer wants me in the picture.Exploring topics such as child autonomy and the relationship between subject and photographer it allows the viewer a personal view into this mother/ daughter relationship ...

Other photographers and photographic projects of interest:

• Oliver Hellowell (photographer)
• My Perspectives (annual competition) 
• Shifting Perspectives (photographic project)
• Kids with a Little Extra (photographic project by Conny Wenk)

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

Who's in the show this year: Adam Lewis
Olga Taylor, Urban Nutcracker, 4th December 2013
When Ann and Barry Lewis brought her son Adam to the Boston Ballet Adaptive Dance program in 2002, they didn’t know that music and dance would become his life-long passion. In fact, at that point nobody knew anything ...

Skip the Resolution - Make It a Goal
Joan Medlen,  Wellness Walk Talk (blog) 1st January 2014
... For parents of children with disabilities, the concept of setting goals is a snap. We've done goal setting since our kids were born. The beauty of this is that you can do it yourself. It doesn't require a team. Your goals are your own. Working with a partner to reach individual goals is a good idea. You may even have the same ones. Goals are also good for our kids! Especially around health related changes ...

What Would He Be Like If He Was Not Born with Down Syndrome?Eliana Tardio, Living and Loving with down Syndrome, 9th january 2014
... There is a time in our lives when questions are just that, simple questions that may lead us to deep reflection ...

Pay it 4Ward
Kelle Hampton, Enjoying the Small Things, 9th January 2014
... I stood long enough to observe a five-minute scene that occurred a few feet from me, and because it was Christmas Eve or perhaps because it mirrored a piece of our future—one that sometimes overwhelms me—I smiled through tears ... I feel like we’re off the “Go” space on the board game now, away from the security of “just let me enjoy these first few years of no worries” and venturing into the next squares that lead to that curvy path of more unknowns ...

What to expect for Down syndrome prenatal testing for 2014

Mark Leach, Down Syndrome Prenatal Testing, 3rd January 2013
... 2014 will see the largest expansion in the number of women undergoing prenatal testing. Many will receive the materials and counseling recommended by professional guidelines. Even more will not, unfortunately ...

Concerns discrimination against disabled widespread and varied in Australia's justice system
Nance Haxton, AM (ABC Radio), 2nd January 2014
Australia's disability discrimination commissioner is concerned that too many of the state's top lawmakers are unwilling to change the justice system in order to make it fairer for people with a disability ...

Sexual Bill of Rights ( online video 5m 24s)
People First of San Luis Obispo, 2nd October 2013
People First of San Luis Obispo is a self advocacy group run by and for people with developmental disabilities. This is intended as a training video for anyone supporting people with disabilities. The first part describes the problem. The second part describes rights we all take for granted ...

We Have Choices (online video (29 mins)
Self Advocacy Association of New York... documentary on individuals with developmental disabilities across New York state who have used individualized supports in taking greater control of their lives ... (there is a link to a 10 minute version)

NSW Civil and Administrative Tribunal opened for business on 1st January

From the NSW Council for Intellectual Disability, E-News, December 2013:

Key features of Guardianship Tribunal preserved The NSW Civil and Administrative Tribunal opens for business on 1 January 2014.  The new NCAT brings together 23 existing tribunals dealing with consumer claims, residential tenancies and a wide range of other issues.   The Guardianship Tribunal also becomes part of NCAT.  However, the Government has responded to the advocacy of NSW CID and others by preserving key features of the Guardianship Tribunal.  The new legislation provides that there will be a separate Guardianship Division of NCAT and: Applications for guardianship and financial management will continue to be heard by three tribunal members. The Guardianship Division will continue to provide written reasons for all decisions. The Guardianship Division will continue to have a hearing for all cases.  NSW CID congratulates the Government and the Attorney General in particular.  The new legislation will prevent the erosion of fundamental safeguards on the rights of people with disability.   In other states, the usual practice is for one member, often with little experience in disability, to hear cases.  Written reasons are rare.  Also, many cases are done by a member just reading the paperwork rather than meeting the person with disability and their family in a hearing.  The first President of NCAT is Justice Robertson Wright who has already shown that he appreciates the informal, expert and inclusive way in which the Guardianship Tribunal operates.   The Guardianship Division will continue to be in its own premises at Balmain and have its existing phone number.   The current Guardianship Tribunal President Malcolm Schyvens will become a Deputy President of NCAT and head of the Guardianship Division. The Guardianship Tribunal of NSW website says that the '... change will not impact on the management or resolution of any matters in progress before the Guardianship Tribunal.'

Health: moya-moya, a rare condition in a young man with Down syndrome

The neurological condition, moya-moya, is a little more common in people with Down syndrome than others, although still very rare.  We know of a small number of people with Down syndrome in Australia who have been diagnosed with and treated for moya-moya, as described in this recent US media report from Coshocton, Ohio:

Local family trying to raise awareness about son's rare brain disease
Coshocton Tribune, 26th December 2013

Wyatt Guilliams, 11, likes taking pictures and photos on his iPad, revels in playing games on his Xbox, and says he can’t wait for Christmas to come. 

That’s all typical for a boy his age, but what isn’t typical for the Warsaw Elementary School fourth-grader is his duel with a rare brain disease called moyamoya syndrome. 

Wyatt has Down syndrome and related growth and development problems. It was through medical tests for his low growth hormone levels that the moyamoya, which causes strokes because of blocked arteries at the base of the brain, was determined in August ... read the whole article from the Coshocton Tribune here.

New funding scheme for dental treatments for children launched on 1st January

Dental care is, of course, as important for children with Down syndrome as for any child - and as costly. 

Eligible families should have received written notification of a new federally funded scheme (through the Department of Health and the Department of Human Services) to provide selected dental treatment for children 2 - 17 yrs from 1st January 2014. The Australian Government Department of Health's website introduces the scheme with a link to further information for families:

The Child Dental Benefits Schedule (CDBS) will commence on 1 January 2014 and will provide access to benefits for basic dental services to around 3.4 million children aged 2-17 years. It will replace the existing Medicare Teen Dental Plan (MTDP). 

The total benefit entitlement will be capped at $1,000 per child over a two calendar year period. The CDBS will have a means test, which requires receipt of Family Tax Benefit Part A (FTB-A) or a relevant Australian Government payment. 

The CDBS will provide individual benefits for a range of services including examinations, x-rays, cleaning, fissure sealing, fillings, root canals and extractions. Benefits will not be available for orthodontic or cosmetic dental work and will not be paid for any services provided in a hospital 

Information for familiesFurther information for families on the CDBS is available from the Department of Human Services website.

People with Down syndrome in the media

Rion Holcombe gets a special letter in the mail (video, 1m 30s)
Posted by Susan Holcombe, You Tube, 6th December 2013
Rion Holcombe, a 20 year old with Down syndrome, gets a special letter in the mail ... and his dream come true, the chance to become a college student!
This short video has indeed gone viral - nearly two million views since it was posted on 6th December.

One of the UK's oldest men with Down's Syndrome celebrates 70th birthday
Joanna Morris, The Northern Echo, 23rd December 2013
... His mother Ruth refused to put (Micky Neal) into a home and he was brought up alongside his siblings in a supportive and loving family – something his brothers and sisters feel has contributed to his long and happy life ...

Jillian the Magnificent is getting married

Paul Daugherty, Cincinnati.com, 27th December 2013
Jillian Daugherty is no longer available. Male hearts sank worldwide Friday, when the estimable Ryan Mavriplis slid a diamond on my daughter’s finger. She’s taken now, boys. Ease away slowly ...

Golden girl
Kristen Alebakis, Bendigo Advertiser, 21st December 2013
For Tara Smith swimming is a chance to escape from the world’s distractions. It drowns out the noise. Stroke by stroke, kick by kick Tara is making strides in one of Australia’s most popular Olympic sports. Described by her coach Michele Berryman-Cooper as a competitive swimmer, Tara is always hungry to be the best she can be. Tara just returned home after winning gold at the Asia Pacific Special Olympic games.

Golden celebration for special olympic bowlers
Josh Fagan, Bendigo Advertiser, 25th December 2013
Francis Bush was a late-comer to tenpin bowling but he has struck gold in the sport. Francis took out a gold medal and a bronze medal at the Special Olympics Asia Pacific games in Newcastle. Fellow Bendigo athlete Sally Brockley-Moon claimed two bronze medals.The pair – who both took up bowling eight years ago – said the event was the highlight of their sporting careers ...

Having a disabled son taught me about love
Michael Sheather, Australian Womens Weekly (January 2014 issue), 19th December 2013
Abridged version of a longer interview in the current print/iPad edition of the Australian Women's Weekly.

Previous stories about people with Down syndrome and their families published by the Australian Womens Weekly:

• We refused to give up our beautiful baby with Down syndrome (2012)
• Beautiful faces of Down syndrome (2012)
• Meet the toddler who shoudn't be alive (2012)
• My daughter with Down syndrome changed my life (2011)

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

After Leukemia, New Year’s Lipstick-Marked Beginnings

Cristina Nehring, Parenting - Motherlode (New York Times blog), 1st January 2014

... Why should I be sad that my girl did not sit up at so-and-so many months, or walk at a year and a half, or talk soon after? Dice listens, she laughs, she caresses; she seems extremely happy. All around us parents mutter about their kids growing up too fast. That is one problem we don’t have. We are taking our bloody good time ...

"Cheers to an awesome Mom"
Margaret Bender, The Ordinary Life of an Extraordinary Girl, 20th December 2013
After three days of decompression, Alex the college student has finally realized something I have been trying to tell her for 20 years…I am an awesome Mom!

Alternative therapies for kids with Down syndrome
Maureen Wallace, She Knows - Parenting, 20th December 2013
Medical experts and parents share tips for spotting potential vs. propaganda. Parents of kids with Down syndrome are a ripe audience for marketing ploys, and of course we'd do anything for our kids if we thought it would help.

A year to remember for Bath's face of Marks and Spencer Seb White
The Bath Chronicle, 24th December 2013
... Seb is now in Year 1 at St John’s RC Primary School, in Oldfield Park, and to his classmates he is different – not because he has Down’s Syndrome, but because he is famous ...

Oh Come, Oh Come

Dave Hingsburger, Rolling Around in My Head, 23rd December 2013

Yesterday afternoon we went to a small Christmas event in our neighbourhood ... This year, like last year, I saw a man with Down Syndrome attending the event along with his mother. She has aged a lot in the last year and is now using a manual chair, which he pushed with great care ... I heard an elderly woman say to her husband, "I don't know why she would bring him to something like this, it takes away from the spirit of the event." ... I silently screamed inside ... I rolled up and said, "I'm not going to make a scene, but I'm going to tell you that I think you are a bigot and a bully ...  if I hear you say that kind of thing one more time, there will be a scene."

What I think ... what I can say
Mohammed Ghonemi, Augmentative Communication Program at Boston Children's Hospital, 27th December 2013
So many families who come to the Augmentative Communication Program at Boston Children's Hospital from the Down Syndrome Program at Boston Children's Hospital know this scenario all too well but we thought the graphic could be a great reminder for extended family at holiday time to assume competence, even if it is not readily evident.

Parents of Children with Down Syndrome Share Their Hopes for 2014
Eliana Tardio, Living and Loving with Down Syndrome, 27th December 2013

... There are hundreds of thousands of families with children with special needs who decide to live with less in response to the lack of options for keeping up with a regular job. So I asked some of these parents what they hoped for in the new year ...

Wow, He Said
Dave Hingsburger, Rolling Around in My Head, 31st December 2013
... I was just in conversation with a man with Down Syndrome who was talking with me, struggling with the fact that he was attracted to, and had kissed, another man. He thought he was in love. He was aching with pain, it was all wrong, he was dirty and sinful ... I couldn't bear remembering the pain of feeling shamed for feeling loved ... So, I said, "You know I'm gay, right?"... We then chatted a bit and he learned that I lived a regular life, in a regular apartment and did regular things. I just did them with another man. He asked not a single question about sex, he just wanted to know about the pattern of our lives ...

Happy New Year !