Friday, 24 October 2014

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

Life is therapy too …
Leticia KeighleyEmbracing 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:

Carers' Day Out - new event

From Carers NSW - you might recall that Julia Taylor introduced her sister, Katie Steffens, to the Masterchef audience during the 2012 season, and that they have been active participants in the Every Australian Counts campaign:

In light of the recent cancellation of Carers Day Out at First Fleet Park, we have organised a FREE cooking demonstration for carers followed by a light lunch, featuring one-time Masterchef contestants and life-long friends, Julia Taylor and Alice Zaslavsky

This is a free event for all carers, but places are limited, so registration is essential.

When:             10.15am for a 10.30am start, finishing 1pm
                        Monday 3 November 2014

Where:            The Elston Room, Carriageworks
                        245 Wilson St, Eveleigh

RSVP:            Wednesday 29 October 2014
                        Carers NSW Communications Team
                        Ph: 02 9280 4744

Please advise dietary requirements when registering to attend.

Thursday, 23 October 2014

Down syndrome awareness ... and beyond (6)

A few words from and about siblings ...

Ellen Stumbo, Finding Beauty in My Brokenness, 14th October 2014
Today I have the great pleasure and honor to share with you a guest post by my oldest daughter (at eight years old). It is Down syndrome awareness month, and she’s talking about what it’s like for her to have a sister with Down syndrome. I’m telling you, it’s a great post ...

Kelle Hampton, Enjoying the Small Things, 8th October 2014... I've heard a lot of special needs sibling stories--most of them inspiring and grateful but yes, disheartening ones too. When thinking about the future and what these three will share, I try not to focus on specific dreams but on the big picture. What do I want for them? What do I love most about my relationships with my brother and sister? ...
Beautiful in his time, 5th October 2014
Today, I asked a childhood friend, Alyssa, to share her perspective of the sister of a brother with Down syndrome ...

A boy, his sister and Down syndrome
Randi Gillespie, Chicago Tribune, 30th September 2014
All he wanted to do was to have her play by his rules. Provoked, Liam shouted at Maddy: "I wish you did not have Down syndrome." Yep, he said it ...

Karley is an early bird ... she sometimes cooks breakfast for her sister
who likes to sleep in. Good morning, Sarah - surprise, surprise!
This week Karley is not cooking breakfast though - she is representing
NSW in aquatics at the Special Olympics National Games in
Melbourne! Good luck Karley. Thank you for the photo.

Disability Inclusion legislation: feedback invited on new NSW regulation

From the NSW ADHC website:

The Disability Inclusion Bill 2014 was passed by the NSW Parliament on 14 August 2014 and is now the Disability Inclusion Act 2014 (the Act). The Act is available on the NSW legislation website at

The Act aims to better recognise the human rights of people with disability and to help people move to the new funding arrangements under the National Disability Insurance Scheme.

Before the Act can commence, the Disability Inclusion Regulation 2014 needs to be finalised to ensure the Act operates effectively. The draft Regulation has now been issued for public consultation.

It is planned that the new Act and Regulation will start on 3 December 2014, International Day of People with Disability.

Further information about how to provide feedback is hereThe closing date for feedback is 5pm on 27 October 2014.

Wednesday, 22 October 2014

Down syndrome awareness ... and beyond (5)

As she has done for some years, Angela Lombardo, Down Syndrome Program Coordinator, Boston Children's Hospital, is posting each day for Down Syndrome Awareness Month on the program's Facebook page - her personal reflections will resonate with families everywhere. This selection is reprinted with her generous permission: 

DS Awareness Month Post #18/19:
Honestly, I have nothing. Some days I don't even think about DS. This word isn't on the tip of my tongue at all times. I am not "dealing" with it 24/7. I am raising my son. I don't forget but it's not on my radar all the time. I didn't wake up today thinking "I will take my son with DS to the mall today". 
This label "DS" plays a huge role in our world. My son has it. I work in a DS program and say this word countless times each week. It doesn't leave my tongue at work but when I am not at work and home and just LIVING it's not the main focus. When he was little, it was. It's all the doctors wanted to talk about. It's what everyone focused on. "He has DS, so...." "Because he has DS, we need to...." Maybe since it was so new to me, it felt like it was always in the front of the line. 
As time goes on, it sort of lost the "need" to be said so much. It doesn't go away, he still has it. Living day to day though, it's not a focus it's more of an understanding. We do things differently DUE to the fact he has DS. We adapt, we accommodate, we bend/twist things as needed but it just goes without saying why. It's just living. It's my knowing what Isaiah needs and meeting those needs. It's less on the label and more on the kid who has it. 
I guess my thought today for DS Awareness Month would be .. yes, I am aware and families are aware but it's not always the main focus...the child is. I look at this picture of us and see my son not just a label.

DS Awareness Month Post #16: 
Does your neck hurt from all the hats you have to wear sometimes on your head? How on earth can we do it all? 
I remember when Isaiah was young and I would just shake my head and say forget it, you are not getting any floor time today! He hated floor time so he would get grumpy and then I would get grumpy and neither of us benefited from his laying on his belly. I felt guilty then would lie to the EI PT who asked if we got our floor time in. Of course, we did ... how could I tell her no way? I was worried I'd be judged. What kind of mother am I if I can't deal with some exercises and his cranky ways? I remember skipping Speech so I could take him to the zoo. I justified it easily since we talked about animals. 
We had so many appointments between doctors and therapists. I felt so much pressure to get him ALL the services he could have so he could do his best BUT I started to feel we were losing focus and burning out. 
At what expense did we do all that? Can't he just be a kid? Can't we just not "treat" or "work" on something? Can we sit around in PJ's watching a movie without feeling we are missing CRUCIAL learning moments? Will he never perfect his pincer grasp due to our love of Toy Story
Balance is everything. I had to shake off that self-inflicted pressure of doing it all. He will have a pincer grasp. He will be just fine. He is not a science experiment or a part time job that I have to punch in and punch out each day making sure I completed all tasks required. He still got his therapies. We still played hooky now and then when we felt wild and crazy. It's a balancing act.
 Find your balance and don't forget that you can always practice the pincer grasp eating Cheerios while you watch Toy Story!

DS Awareness Month Post #3: 
It's fine to cry. There are so many reasons why tears can come. 
When you first hear diagnosis, you may have tears from shock, tears from being afraid, tears from loss, tears from being overwhelmed. You may cry when you first hear from relief, understanding, peace. Your tears may not come until later. You can have tears from loving someone so much it just hurts. You can have tears from wanting to fix something way out of your control. 
We can cry about wanting to take away troubles that we can't prevent from coming. We can cry out of pride and feeling so much relief about something wonderful that happened. We can cry with others since we can relate. We can cry for others since we can relate. We can cry when we learn things weren't as bad as we thought. We can cry when things get harder than we ever thought they could be. I am not a huge crier but when it comes it's needed. It's a release. It's a huge reminder that something means so much to me. 
Some may feel crying is negative but I think it's a huge testament that we have hearts, feelings, love and people that mean the world to us. I have shed tears for so many reasons. I have been with so many families shedding their own tears out of sadness, fear, happiness, joy, etc. People apologize but I say don't. You are doing what you need to do right now. You need to cry and there is nothing wrong with that. It's fine to cry.

Special Olympics National Games 2014, Melbourne: on now

Congratulations to all the athletes selected to compete in Melbourne at the 2014 Special Olympics National Games.  The Opening Ceremony was on Monday evening, and competition started yesterday.

The very first gold medal of the Games was won in the pool, by our own Louise Richardson - congratulations Louise!  There were lots of pale blue shirts (go Team NSW) sporting medals by the end of the day, and the excitement is building as each sport begins.

Special Olympics Australia is posting photos regularly on Flickr and on Facebook, and most state and regional teams have their own Facebook pages where you can follow along with the competition and other Games events.

Good luck for the rest of the week, Team NSW - have a wonderful time!

Tuesday, 21 October 2014

Selfie project: Women With Disabilities ACT

Women with Disabilities (ACT) announced this project on their Facebook page earlier this week:
WWDACT is embarking on a new project to encourage women of all abilities to be proud of who are, what they do and what they look like. The organisation is collecting "Selfies" of women doing every day activities whether it be participating in sport, art, social activities, or just being by yourself. 
It's easy. Just take a photo of yourself, upload it onto your computer and then e-mail it to us. If you have difficulty taking photos, just get someone else to. 
WWDACT is joining in the "Selfie Revolution" by beginning its own "WWDACT Selfies Revolution" to promote more positive body image perceptions of women with disabilities. Changing one perception at a time, it begins with us. 
WWDACT invites you to send in these "Selfies" and we will publish them in a tasteful and beautiful way. More information will be coming shortly, but we really hope you can participate now by e-mailing your selfie to

Step Up! 2014 Riverina: Sunday 26th October

We had a fantastic day at Step Up! Sydney and Picton on Sunday 19th. Thank you to everyone who came along and supported us. Pictures will be uploaded over the next few days.

Next up is Step Up! Riverina, in Wagga Wagga next Sunday (26th) - click here to register.

Monday, 20 October 2014

People with Down syndrome in the media

Hunter Elvis Festival in Argenton lets fans follow that dream
Helen Gregory, The Newcastle Herald 19th October 2014
Just the first two photos accompanying this article - there is no mention of Down syndrome, it is not needed.

Incredible dancer with Down syndrome pushes toward greatness
KMSP TV: Minneapolis-St Paul, 17th October 2014
Mikayla Holmgren has been dancing since she was a little girl. When she's dancing, she's in her element. Just like any other dancer, she's pushed to be great, and her instructor says there's nothing she can't do ...

Jobsupport 600 Celebration
Nine News, 13th October 2014

Phoebe Mitchell chases success at the World Down Syndrome Swimming Championships
Nick Wade, Geelong Advertiser, 13th October 2014
World-beating local swimmer Phoebe Mitchell is aiming for more gold and more records on the international stage. The champion local swimmer has qualified to represent Australia at the seventh World Down Syndrome Swimming Championships in Morelia, Mexico, next month ...

43-year-old with Down syndrome drops more than 50 pounds
Dannika Lewis, Channel, 2nd October 2014
Every Tuesday morning Zach McQuade can be found on the floors of Hybrid Fitness. His favorite new exercise involves boxing gloves.

“It's really fun, and you go really fast with punch, punch, punch,” McQuade said.

Trainer and dietician Mike Gorski didn’t know what to expect when McQuade started training with him about a year ago ...

Former Saint Kilda player Ian Rowland donates bike after Chris' was stolen
Tahlia MacPherson, The Border Mail 2nd October 2014
An overwhelming community response to a bike theft in Albury at the weekend has restored a father’s faith in humanity. Harry Kerr said his son, Chris, had been devastated when his bike was stolen from the Regent Cinema foyer on Sunday ...

Meet the first Peruvian with Down syndrome to graduate college
Lourdes Fernández, Peru This Week, 3rd October 2014
Bryan Russell Mujica, 22, finished his fifth year in journalism at USIL. His first achievement was traveling alone by bus. He felt, then at age 17, independent. That day, led by his feet, he began walking in Miraflores and ended up lost in Chorrillos. He was never afraid. Moreover, Bryan says he almost never feels fear despite having Down syndrome which has caused him to be almost inseparable from his parents.

“A gentleman gave me a sol and another walked me to the bus. I was happy to tell my mom, who was frightened,” he says laughing.

Friday, 17 October 2014

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 ..

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!)

Will you be at Step UP! this Sunday?

Step Up Sydney and Picton are this Sunday. Its not too late to register or come down.

Sydney - Sunday 19th October 2014

Picton - Sunday 19th October 2014.

Wagga Wagga - Sunday 26th October 2014

Newcastle - Sunday 23rd November 2014

If you are considering coming down but are not sure, take a look at last year's event to see what the day is all about. To view the the video click here.

Step Up! Sponsorship
If you can't make it along consider sponsoring a participant - click here to donate

The Up Club @ Step Up!
The Up Club is a social group for people with Down syndrome. It is for people who are 18 years old and over who live in the Sydney area. Flavio is the Up Club Co-ordinator. Flavio and the Up Club members will be at Step Up on Sunday. If you want to find out more and maybe become an Up Club member, talk to Flavio on Sunday

It’s easy to get involved – We're also still looking for more volunteers, so if you have any family and friends who aren't walking but would like to help out on the day, email us at

Thursday, 16 October 2014

Down syndrome awareness ... and beyond (4)

A distinct move to take 'awareness' up a notch, to examine what we mean and intend by 'awareness' activities has been emerging strongly in recent years' 'Awareness Months/Weeks/times, and is addressed here by the always-worth-reading David Perry. Thanks to Catia Panetta for drawing it to our attention:

Down syndrome isn’t just cute
David Perry, Aljazeera America, 15th October 2014
... Throughout October, adorable photos of people with Down syndrome and heartwarming, inspirational stories will stream across the Internet, all in the name of awareness. Shirts declare that extra chromosomes make you a hero. Other slogans and memes praise parents of children with Down syndrome. One T-shirt proclaims, “No frowns, just Downs!”

In fact, sometimes my son, a 7-year-old with Down syndrome, frowns. So do his parents. In the Down syndrome community, we have worked so hard to promote the positives that too frequently we leave no space to discuss the struggles ...

... (My son’s) value as a person is not based on his cuteness. What matters is our shared humanity ...

2015 Down Syndrome NSW Calendar - orders open now

To order your copies of the 2015 Down Syndrome NSW Calendar please down load the order form and return them to our office for quick delivery.

Wednesday, 15 October 2014

'I am different, that is good', Sarah Gordy

A previous link to an interview with British actor Sarah Gordy remains one of our most popular posts, so we think you will enjoy this one too, as she continues to break new ground:

Saba Salman, The Guardian, 14th October 2014
Sarah Gordy, who appears in Manchester play Crocodiles, breaks new ground by playing a character without a disability ...

    Tuesday, 14 October 2014

    Profs Ann and Rud Turnbull retire

    Ann and Rud Turnbull's work, and that of the Beach Centre, is well known and highly regarded well beyond the University of Kansas, and the US - they are being honoured on their retirement:

    Retiring special-education professors’ impact went far beyond KU
    Giles Bruce, Lawrence Journal-World, 12 October 2014
    Ann and Rud Turnbull just wanted other people with disabilities to have the same type of "enviable life" their son had ... The Turnbulls are retiring after careers that spanned more than three decades at KU and included the creation of the university's Beach Center on Families and Disability. Their legacy will live on long after they're gone because of the impact they made on disability law, research and practice ...

    Down syndrome awareness ... and beyond (2)

    Raising awareness about the abilities and needs of people with Down syndrome is needed within professional communities, too.  These articles are designed to inform medical professionals:

    Do expectant moms receive adequate information on Down syndrome?
    David McNamee, Medical News Today, 2nd October 2014
    October is Down Syndrome Awareness Month. Though an annual campaign, it seems particularly relevant right now due to recent high-profile controversies involving negative perceptions of Down syndrome pregnancies ...
    David McNamee, Medical News Today, 3rd October 2014
    Yesterday, as part of Down Syndrome Awareness Month, we looked at some of the controversial issues and popular perceptions surrounding pregnancy and Down syndrome. Now, in a follow-up feature, we speak to scientists and organizations who are working on groundbreaking research to improve outcomes for people with Down syndrome ...

    October is National Down Syndrome Awareness MonthKishore Vellody, Be Glad You Have Children's, 6th October 2014

    ... There are an estimated 350,000 people with Down syndrome living in the United States today. However, most people are not aware of some very interesting facts about Down syndrome. Most medical textbooks and websites tend to focus on the potential medical complications that people with Down syndrome may face. However, I think a blog on Down Syndrome Awareness month is a great place to talk about a few of the many positive aspects of Down syndrome that are not frequently discussed. Let me share some examples of what I mean ...

    Monday, 13 October 2014

    Sydney Carers Day Out 2014 cancelled due to bad weather conditions

    Late cancellation message from Carers NSW:

    Due to heavy rainfall and strong winds predicted for Tuesday 14 October,  Carers Day Out at First Fleet Park, Sydney, will unfortunately be cancelled. 

    As the event was not able to relocate at short notice, in the interest of safety, we are forced to cancel the day’s activities. The Bureau of Meteorology forecasts heavy rain, thunderstorms and winds of up to 55km for the day of the event.

    There are many events being held across NSW to celebrate National Carers Week 2014, funded by the Department of Family and Community Services. Please visit our website for a full calendar of events.

    We apologise for the late cancellation and hope that carers across NSW have a wonderful Carers Week.

    If you have any questions please do not hesitate to contact the Media and Communications Team at or on 9280 4744.

    New research reveals unmet needs of ageing parent carers

    This week is Carers Week in Australia.

    Anglicare (media release), 13th October 2014

    Many ageing parent carers, aged over 60 years caring for a son or daughter with a disability, are looking after their loved one without a transition plan and with little support, according to a new study released today by Anglicare Sydney.

    The study that surveyed 159 carers found the importance of a transition plan arrangement was mentioned by four out of five carers. Yet only 10 per cent of carers surveyed had received assistance with transition planning prior to joining Anglicare Sydney’s program.

    “Most ageing parent carers in our program are female and about a fifth are in their 80’s or 90’s. They have been providing care for 30 years or longer and one of their key concerns is for their child to be cared for after they are no longer able to do so.

    “However, the lack of appropriate, affordable and secure supported accommodation for people with a disability makes transition planning into alternative accommodation difficult for families,” explains Sue King, Director of Advocacy and Partnerships. 

    “Stress and anxiety are prevalent among ageing parent carers, with two in three carers exceeding the normal range of stress. Yet they have been less likely to seek assistance.  Carers entering our program indicate that case management, transition planning, respite and increased social contacts for their children with a disability are vital support services. However, many hadn’t accessed these supports for at least 12 months prior to seeking support from us.

    “We also found that although many carers accessed respite, it was still not enough and came at a cost. Over one third of carers entering our program needed respite including emergency respite when they were ill or needed hospitalisation.”

    The study also highlighted that:

    • There were significant positive changes in carers’ wellbeing while they were in the program
    • Most people with a disability wish to stay in the family home as they age
    • Parents and care recipients need to be at the centre of a network of support
    • Regular planned respite periods assisted carers to sustain their caring role long-term
    “Currently there remains no legislated enforceable right for carers to assessment and support and there is no guarantee that carers’ needs will be assessed or catered for under the NDIS,” says Ms King.

    “We urge the Federal Government to amend the National Disability Insurance Scheme Act 2013 to include a provision for a separate carer assessment in addition to the participant’s assessment and plan. The Federal and State Governments and the National Disability Insurance Agency should also provide support for carers of people with a disability who are not NDIS participants.

    “The National Disability Insurance Agency and the private, public and community housing sectors should also fund the development of co-located housing models suitable to accommodating ageing parent carers and their adult son or daughter with a disability.”

    NDIS overlooks needs of carers, says report
    Lisa Vinsentin, Sydney Morning Herald, 13th October 2014
    ... Evelyn Scott, 69, who is the primary carer of her daughter Kylie, 34, said she knows of many parents in her situation who are struggling to find accommodation for their disabled child in Sydney. 
    "Those of us who are ageing and getting more and more tired and worn out are still looking for the solutions to the difficulties we see as we get older," Ms Scott said. 
    "We still have our sons and daughters living with us because the supports aren't in place."
    Kylie, who has Down syndrome, is able to live independently but can't afford to pay Sydney's high rents, and would be forced to live somewhere far from her existing support networks, and with limited access to public transport, Ms Scott said. 
    "It's something that I really would like to see Kylie able to establish in her own right while I'm still around to assist. 
    "I've come up against brick walls everywhere. It's been a very frustrating year."

    Discobility 2014

    Peninsula Community Centre
    93 McMasters Road, Woy Woy

    12 pm - 4 pm, 22nd November 2014

    Free entry for all ages. Gold coin donation welcome.
    Bookings essential: 4341 9333 or 

    Friday, 10 October 2014

    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 ...

    St Andrews College Children's Camp 2014

    From the 3rd to the 7th of December 2014 St Andrews College (University of Sydney) will proudly host its third annual St Andrews College Children’s Camp for children aged 6 - 15 years, with physical and intellectual disabilities. The camp provides children with the opportunity to participate in a range of activities, form new friendships, be challenged to try something new, and gain a sense of independence.

    The camp is at no cost to families and will be held at St Andrews College at the University of Sydney. Applications are now open (extended to 17th October), and all details, contacts and registration forms are available form the SACC website.

    Thursday, 9 October 2014

    Families, carers and the NDIS - webinar, 13th October

    Marking Carers Week, the National Disability Insurance Agency is hosting a webinar on Monday 13th October 2014 at 1.00 pm (Eastern Daylight Time)

    Panellists will discuss their experiences as carers and family members with the Scheme. You are invited to join the discussion and submit questions.

    Join the the webinar by following this link.

    The webinar comprises audio, visual, live captioning and Auslan to make it widely accessible.

    Submit questions and comments during the webinar via Twitter using the hashtag #NDISWEBINAR or through the Livechat facility on the webinar page.

    If you have questions, phone 1800 800 110.

    Wednesday, 8 October 2014

    Latest additions to our 'events' listings

    Down Syndrome NSW events

    Save the date for Show Off! 
    Down Syndrome NSW will present the Show Off Arts Festival for the first time this year. More details soon.
    Sunday 30 November 2014 - Riverside Theatres Parramatta

    Other events

    Intellectual Disability and Ageing Forum
    Agency for Clinical Innovation - facing the challenges with a multidisciplinary team
    Wednesday 15 October 2014 - Sutherland Hospital Auditorium

    Success In Transitions
    Imagine More Annual Conference - local, national and international approaches to support meaningful and inclusive lives for people with disabilities. It will highlight ideas through the sharing of stories of what is possible.
    6th - 7th November 2014 - Canberra

    Resourcing Families - free workshop will explore practical strategies to support people with disability to develop their relationships and connections; build their skills and self confidence; and enhance their image and reputation. Guest presenter Jane Sherwin.
    Thursday 13 November 2014West Ryde

    Direct your support, live your life! How you can use the NDIS to be in charge
    Presented by In Charge - discover the life benefits of directing your own support; 
    find out how YOU can do this; hear from people with disability and families successfully self-directing.
    Thursday 13th or Wednesday 19th November  2014 - Charlestown

    IDEAS - aims to give people with disabilities, their families and carers the opportunity to see, hear and try the best local, national and international options to assist them in making important decisions in all areas of their lives.
    Friday 14th and Saturday 15th November 2014 - Maitland

    Down syndrome awareness ... and beyond (1)

    Officially in Australia we celebrate Down Syndrome Awareness Week, during the third week of October.  It often spills over into the days before and after the official week, helped along by our increasingly global connections via social media, as the US marks Down Syndrome Awareness Month throughout October - maybe we should just regard part or all of October as "Down Syndrome Awareness Time".  In any case, during this time, a great deal of good, thoughtful writing, many beautiful images and videos, and any means of communicating a message, emerges around the world, and we will highlight some of the best of it here, over the next couple of weeks or so ...

    Caleb lives with his  family on the south coast 
    of NSW, and he intends to make the most of October!

    Down Syndrome Awareness
    Garden of My Heart, 1st October 2014
    ... This month, social media will be flooded with extra pictures of people with Ds and many will choose to share facts and figures. That is good, but I’m craving something more this year. The internet links families and individuals with Ds in very powerful ways, and as I’ve said on this blog in the past, it’s time to harness that voice and move past the awareness script our community seems to be stuck repeating ...

    One of the most important things to share during Down Syndrome Awareness Month
    Sipping Lemonade, 3rd October 2014
    ... This moment, like so many moments, is just a reminder that much of the sadness I felt those first days after Kate was born was based on unfounded fears. I grieved the little things that I thought I had lost — when in reality, our family has gained all of that and more ...
    Meriah Nichols, Huffington Post (blog), 1st October 2014
    October is Down Syndrome Awareness Month here in the United States. I'm personally not out to promote awareness anymore, because we are there already. We are aware.

    Family raised daughter with Down syndrome before aid was available
    Michael Reschke, Herald-Times Online, 6th October 2014
    It’s hard to say how the decisions you make today will shape tomorrow, but at 83, Tim Hines has had some time to think about his ... “We had both been raised to deal with what was there, which is a blessing by itself,” he said. “We, it just never entered our minds that we would do anything other than try to bring her along.”

    Tuesday, 7 October 2014

    Warning on attempted NDIS scam

    The National Disability Insurance Agency (NDIA) has become aware of a potential scam involving participants of the National Disability Insurance Scheme (NDIS).

    Please be aware that the NDIA will not ask for personal information, such as your bank account details, over the phone or in an email. You should only provide this information to the NDIA using the Bank Account Details Form. This form can be returned to your local NDIA office or by post to:

    National Disability Insurance Agency
    GPO Box 700
    Canberra, ACT 2601

    If you receive a phone call from someone claiming to be from the NDIA and requesting this information, do not give it to them.

    Please report all cases of attempted scams to your NDIA contact or call 1800 800 110.

    Visit the NDIS Privacy web page to find out more about the NDIA’s procedures for handling your personal information. You can also find out more about known scams via the Australian Government Scamwatch website.

    Source: DS NSW e-Update October 2014 #1

    Monday, 6 October 2014

    I Helen, I Hercules ... Wollongong, December

    The end of the year gets busy, so put this one in your diary and book your tickets now ... it look very interesting!

    Down Syndrome NSW Board 2014 - 2015, and annual report 2014

    The 35th Annual General Meeting of the Association was held on Sunday 28 September 2014 at the Information Cultural Exchange space in Parramatta.

    The newly elected Board for 2014-2015 is
    President:  Matthew Kelly 
    Vice-President:  Margot Elliffe
    Treasurer:  Richard Yee 
    Josh Coburn
    Graeme Dube
    Chris Elenor
    William Grieve
    Meaghan Hepplewhite
    Andrew Hinde
    Jacqueline Little
    Jason Lloyd
    Greg Simmons
    The Annual Report 2013-2014 can be downloaded here.

    Friday, 3 October 2014

    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 ...

    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 ...

    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:

    Thursday, 2 October 2014

    Step Up for Down Syndrome 2014 in the Hunter

    2015 DS NSW Calendar released - order now!

    To order your copies of the 2015 Down Syndrome NSW Calendar please down load the order form and return them to our office for quick delivery.

    Thank you to all who have contributed photos - whether they were your first or the latest of many.

    Wednesday, 1 October 2014

    Good health: information on vision and glasses

    More good information from the UK: 
    Our colleagues at the Down's Syndrome Association based in London have released online two articles on vision and glasses for children with Down syndrome, originally published in the DSA Journal #127, Spring/Summer 2013. 

    Both articles are written by Dr Maggie Woodhouse, an internationally recognised expert in vision and children with Down syndrome, with many years experience in both research and clinical practice.

    'See and Learn Speech' - free webinar 2nd October

    This free webinar from UK based Down Syndrome Education International  is scheduled for 6.00 pm (18.00) Sydney (Eastern Standard) time.  Other time zones are listed on the website: 

    Helping children with Down syndrome to develop clearer speech
    People with Down syndrome often struggle to express themselves clearly. This can be frustrating and a significant obstacle in daily life and in education. Speech clarity is one of the most common concerns identified by families of children with Down syndrome.

    Introducing See and Learn Speech 
    - free webinar

    This live online event offers guidance about speech development for children with Down syndrome and how DSE's See and Learn programmes can be used to teach early sound discrimination and speech production skills, and to improve speech clarity.

    Further information about See and Learn is available on the See and Learn web site.

    The event is presented by Professor Sue Buckley, DSE's Director of Science and Research and an internationally recognized expert in education for children with Down syndrome.

    ... all details and a link to register are here.

    Tuesday, 30 September 2014

    Step Up 2014

    Only two weeks till Sydney Step Up!  

    Counting down the days till this years Step Up? Ask your family and friends to join you for a great day.There are four events to choose from:
    Sydney - Sunday 19th October 2014
    Picton - Sunday 19th October 2014. 
    Wagga Wagga - Sunday 26th October 2014
    Newcastle - Sunday 23rd November 2014
    It’s easy to get involved –
    1. Check out the four different events happening around NSW and decide which is best for you 
    2. Register online HERE 
    3. Invite your friends and family to join in 
    4. Get fundraising
    5. Come on the day, walk and have fun!
    Our goal is to raise $50,000 this year and the only way we can do it, is with your help.

    So what are you waiting for? Jump online now and become a part of our team!

    We're also still looking for more volunteers, so if you have any family and friends who aren't walking but would like to help out on the day, email us at

    People with Down syndrome in the media

    Kimba Wall to feature in a book about the families of children with Down syndrome
    Jesse Wray-McCann, Mordialloc Chelsea Leader, 23rd September 2014
    When Kimba Wall was born with Down syndrome, the doctor told her parents to take her home, but not expect much from her. Twenty-five years later, the Chelsea woman’s story is being used to inspire and encourage other families with newborns diagnosed with Down syndrome...

    Sarah Horgan, Evening Echo, 22nd September 2014
    A teen with Down Syndrome hopes to see his name in bright lights after landing a major film role.
    Harry Nagle from Ballyfeard near Kinsale vowed to become a movie star, like his idol John Travolta, after joining CADA Performing Arts as a child ...

    Photographer with Down's syndrome 'sees the world differently'
    Kate Monaghan, BBC News Magazine, 9th September 2014
    Photographer Oliver Hellowell has Down's syndrome, which his mother says means he sees the world differently from most people. Oliver's unique way of capturing the natural world has recently gained him a lot of fans ...

    Qantas flight attendants break into song to surprise Glee actress Lauren Potter
    Robyn Ironside,,  19th September 2014
    QANTAS flight attendants have turned the tables on one of the stars of hit television show Glee, delivering a pitch perfect welcome to Australia for Lauren Potter. The actress who plays Beth in the series, landed in Australia on Wednesday ahead of this weekend’s e.motion21 Annual Dance Spectacular in Melbourne.

    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.

    Monday, 29 September 2014

    Trivia Night success - thank you

    We had an impressive turnout of 180 people at our Trivia Night at Five Dock RSL on 30th August. It was a lively mix of members, their friends and families, staff, board members and a strong representation of Up Clubbers.

    A great night was had by all with the winners taking home an impressive prize pack that included; hand made cards by Bridget Parker, wine, and a gift voucher. There were prizes for second and third place too. There was a special prize given to the most valued player on the losing table, won by DS NSW Board member, Jason Lloyd.

    We are looking to roll this out across the State, so if you are interested in hosting your own trivia night please get in touch with the Ben Chinnock, our Community Engagement Manager, via and he will be able to provide you with a 'how to' guide.

    The winning team - well done!

    Thank you Scrappers!

    Scrapheap Adventure 2014 - group photo from Saturday afternoon,
    20th September, in Nymboida
    See all the photos at Scrapheap Adventure 2014 on Facebook

    This is what founder and organiser, Perry Gilsenan had to say immediately after getting back from last weekend's Scrapheap Adventure Ride:

    Scrapheap Adventure Ride 2014 was one of our best. A great venue and a great bunch of people raising close to $70,000 for Down Syndrome NSW!!!

    There was lots of laughter on arrival and the feedback was everyone had a great ride getting to Nymboida!

    Friday night there were 3 different stews and a beef Curry to feed close to 100 people. No complaints and ample available. The big shed was great at meal times.

    On Saturday morning Dave Ramsay lead a ride, with a lot of laughs too with the Milan 50cc scooter getting the most air on some of the jumps.

    Saturday night was our biggest night ever with about 150 people sitting down together for a good dinner, trophies awarded, charity auction and then the raffle prizes! Looks like we will hit $70,000 in funds raised this year! A Great Effort by one and all.
    Best Scrapper - Chris Schneider - Milan 50cc Scooter
    Best Engineered Scrapper - Charley Loomis - FZWhy 250
    Best Vinduro - Demus Tintner - XT500
    Best Sidecar - Dak Dak Dave Kawasaki 750 Sidecar
    Most Raised Individual was Andrew Hunter who raised over $6,000, Graeme Girdler $4,136, Mike Case $3,076
    Most Raised Teams was Team Inverell who raised over $10,000, closely followed by Toowoomba Scrappers $7,400 then Team DT with $4,075
    Longest Distance was Graeme Girdler who rode up from the South Coast, only getting his licence 8 weeks prior. Matty Brumby had come up from Melbourne but only rode from Sydney.
    Hard Luck Award went to Adam Wurr, who ran an old IT175, restored over 12 months. His bike broke down about 45 minutes after we left Dural and was shedding parts consistently whilst on the trailer the rest of the way to Nymboida.
    Once again a big THANK YOU to all who have attended or supported riders on this year's Scrapheap Adventure Ride.

    Best Sidecar - David Scharf,  Kawasaki 750 Sidecar
    And thank you, Perry!