Position vacant: Down Syndrome Australia

Chief Executive Officer

Permanent Part-time
$110k pro-rata plus Superannuation

• Contribute to an exciting time of growth and change
• Influence decisions on a national level that impact individuals living with Down syndrome
• Drive a culture of inclusion, excellence, innovation and thought leadership

Down Syndrome Australia (DSA) was formed in 2011, by eight State and Territory Down Syndrome associations as their national peak body. The key roles of DSA are to:

• Influence decisions on a national level that impact individuals living with Down syndrome .
• Develop policy on issues of relevance to individuals living with Down syndrome.
• Promote awareness of and respond to issues of relevance to Down syndrome.
• Support national collaboration between the member associations.

We are seeking a part-time (currently 0.4) CEO to lead the organisation into the future.

This is an exciting opportunity for an experienced professional to guide and shape policy and advocacy, and to manage, build and strengthen successful relationships with key stakeholders and government.

Reporting to the Board, the successful candidate will be a committed self-starter, with experience in government relations, ideally within the disability or not-for-profit sector. You will have a track record of developing and meeting strategic, operational and budgetary objectives, including securing funding. You will have a contemporary attitude to disability and the proven ability to proactively identify and respond to issues relating to the Down syndrome community, working collaboratively with media, disability sector peers and all levels of government. Presenting with excellent interpersonal, influencing and professional networking skills, the successful candidate will possess demonstrated project planning, implementation, management and reporting skills. Employment will be subject to possession of a current police clearance.

For further information or to obtain the employment package please contact:

A/Chief Executive Officer, Jackie Softly Jackie.softly@downsyndrome.org.au
Mobile: 0417 850 717

Applications must be received by Monday 17 November 2014

Health news, commentary, information

While we've been focussing on awareness, acceptance and inclusion, some excellent information on a range of health matters has been building up - time to get it out:

Screening for celiac disease in children with Down syndrome - from the Down Syndrome Clinic at Mercy Children's Hospital, Kansas City

The NDIS and health services - useful links to information on health services and the NDIS from Disability Directory

Dementia in those with Down syndrome now twice as likely - update of a report on the health of people with intellectual disabilities in Ireland, and health policy proposals

Silent aspiration - from the Adult Down Syndrome Clinic (Chicago)

Living life to the fullest with Down syndrome  - from the Adult Down Syndrome Clinic (Chicago)

Obsessional slowness - from 2010, re-posted by the Adult Down Syndrome Clinic in response to a recent question, about an uncommon but very challenging phenomenon

Three vulnerable patients a day die due to lack of care - a UK report (2014) says that ... 'A shortage of specialist nurses trained to care for people with learning disabilities is putting the lives of thousands of vulnerable people at risk ...'

Through the Looking Glass presentations - selected presentations from the 25th annual PANDDA (Professional Association of Nurses in Developmental Disability Australia)  conference held in October 2014 

• Local information events about health matters are regularly listed on the Events page, here

Down Syndrome Awareness ... and beyond (8)

As we move from October into November, here are some nice 'rounding off' pieces about awareness and where to next, and some links to how Canada is marking it's own Down Syndrome Awareness Week (1 - 7 November):

The Grand Finale
Mumma Love, 31st October 2014
Links to each of this year's 'awareness' posts from various writers published on this blog, in one of the best collections for the year.

So now you are aware
Leahe Thompson, Our Cora Bean, 29th October 2014
... There is much to be learned and taught and shared beyond awareness ... What we all want for our loved ones with Ds and other disabilities really is acceptance. Acceptance that the value of their lives shouldn't be a legitimately debatable subject. Acceptance that people with disabilities belong in our communities, in our classrooms, in our lives. Acceptance that people with disabilities deserve to be able to work for reasonable wages, vote as citizens, and be considered adults with rights that others are granted without question ...

Nicholas Popowich talks about life with Down syndrome
CBC News Saskathewan, 1st November 2014
Nicholas Popowich is an ambitious 24-year-old. He spends half of his working week studying theatre arts at the University of Regina, and the other half working at a SaskTel kiosk in a Regina mall ...

The Canadian  Down Syndrome Society has posted this billboard across the country:

• You can follow CDSS's campaign on Facebook here

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.

Webinar on self-directed support in Australia

Reserve your spot now at the In Charge webinar

Direct your support and live your life!

Wednesday November 5, 1-2pm AEST
Drawing on the personal experiences of people within the disability community who have worked to take control of their destiny, we are hosting an online seminar to help you discover what options are available. Hear firsthand how to make these choices reality.

In this one hour webinar you will hear from 3 people directing their own supports, including with the NDIS.

Our webinars are Live Captioned and have an AUSLAN interpreter.

Register here. 

New publications

What's Inside You Is Inside Me, Too: My Chromosomes Make Me Unique

Deslie Webb Quinby, Jeannie Visootsak MD, and Michael Johnson (Illustrator)

This new book for children was released last week. Details from the Amazon website are here.

Every child, every person, every living thing is unique, in big part, due to chromosomes. Children with Down syndrome have an extra chromosome. This book informs people about Down syndrome in a fun illustrative way. In the process, it also explains chromosomes and their role in making every living thing special. A valuable tool for educators, siblings, individuals with Down syndrome, advocates and for those innately curious. (Publisher)

Deslie Quinby has a child with Down syndrome, and Jeannie Visstak is a Developmental-Behavioral Pediatrician and the Medical Director of the Down Syndrome Clinic and Down Syndrome Clinical Trial Unit at Emory University, Atlanta.

New volume of Sam's Secret Journal for young readers
A third volume in the Sam's Secret Journal series, by Sean Adelman (featuring a central character who has Down syndrome), Memorial Day, has been released this week.

Sam is a fun, adventurous, tween that loves a mystery. She also has Down syndrome. Enjoy these fun, middle reader, chapter books based on real life characters.

All three volumes are available in paperback, and the first two are also available for Kindle and Audible (as will the third be soon). For further information on editions and future titles, sign up to the Sam's Secret Journal Facebook page


Down Syndrome World - a new magazine
The Global Down Syndrome Foundation, based in Denver, Colorado has announced publication of a new quarterly magazine, Down Syndrome World.  It is available by membership subscription, and includes a digital edition:

Down Syndrome World will always focus on Down syndrome research and medical care and aspires to provide these stories in an easy to read, entertaining and informative way - Mission 

Through the Looking Glass - presentations
Selected presentations from last week's 25th annual PANDDA (Professional Association of Nurses in Developmental Disability Australia)  conference are now available online, covering a wide range of topics under the banner Through the Looking Glass… wisdom, reflection, experience.

First Annual Report from the NDIA released: news and commentary on the NDIS (26)

NDIA - first annual report
The first annual report of the National Disability Insurance Agency was tabled in Federal Parliament today (29th October 2014). You can download the full annual report here. 

Brief summary of the first year over the four trial sites:

• 7316 plans for people with disability
• 94 % of participants with a plan rated NDIA planning good, or very good
• average package costs were $34,600 per year... in line with the $35,000 average estimated by the Productivity Commission
• approximately $130 million in funding was delivered
• approximately 1350 NDIS service providers were registered
• 11% of the 516 National Disability Insurance Agency staff live with a disability and 53% identified as having a lived experience of disability
• long-term economic benefits of the NDIS are estimated to exceed its costs, adding around 1% to gross domestic product and saving $20 billion per year by 2035

 If you have difficulty accessing this and other reports, please contact the NDIA.

The NDIS one year in: Experiences of carers in the Hunter trial site
Carers NSW Issues Paper, September 2014
The paper summarises key issues arising for carers from the first year of the NSW trial of the National Disability Insurance Scheme (NDIS). The paper draws on research, consultation and policy analysis and intends to contribute to the ongoing refinement of NDIS design and implementation.

• The NDIS held a webinar on 13 October, titled Families, carers and the NDIS, dedicated to carers as part of Carers Week. You can watch the webinar via the NDIS website. 

Carers’ Role in NDIS Uncertain

ProBono Australia News, 9th October 2014

The future of support for carers is “highly uncertain” as NSW transitions towards the National Disability Insurance Scheme (NDIS), according to a new report by peak body, Carers NSW ...

NDIS Evlauation

The National Institute of Labour Studies (NILS) at Flinders University is carrying out the NDIS Survey as part of its independent evaluation of the National Disability Insurance Scheme (NDIS). The Social Research Centre is collecting the survey information on behalf of NILS. This evaluation is funded by the Australian Government Department of Social Services (DSS) ...

Field workers to ensure NDIS flows to Aboriginal community, conference toldAshleigh Gleeson, Herald-Sun, 1st October 2014
Specialised field workers will be employed to make sure Aboriginal people do not miss out on the National Disability Insurance Scheme, a Newcastle conference heard on Wednesday. Minister for Disability Services John Ajaka announced the NSW government would invest $480,000 to hire Aboriginal caseworkers who would serve indigenous communities “spread far and wide” ...

NDIS enters next phase in NSW
NSW Ageing, Disability and Home Care, Media Release, 22nd September 2014
Minister for Ageing and Minister for Disability Services John Ajaka today announced the next phase in NSW’s implementation of the National Disability Insurance Scheme (NDIS).

“We’re about to start the process of transitioning the Home Care Service of NSW into the non-government sector, ensuring the sustainability of these vital services provided to some of our community’s most vulnerable,” Mr Ajaka said.

“As NSW moves towards the full rollout of the NDIS, services provided by government, including Home Care are being transitioned to the non-government sector ... read the full media release here

Down syndrome awareness ... and beyond (7)

The Virtue of Stubborn

Lisa Bridle (guest post) Mumma Love, 23rd October 2014

... We have stubbornly resisted the low expectations and special path reserved for people with disability. We have been unwavering and obstinate that Sean would get a life as ordinary as possible, be recognised for his gifts not his challenges and that, if necessary, we would fight for his inclusion in the mainstream of community life. Equally Sean has persistently demonstrated his determination to be at the centre not the margins – and to make a place for himself in the world, even in places where he is not immediately welcomed ...

Why it’s not always about me
Kat Abianac, Parker Myles, 24th October 2014
... Then you get the others. They’re not the majority- but they are the hardest type of stranger for me. This type of person just wants to share, and overshare ... But, the next time I heard that phrase that so often goes screaming through my head, it changed everything for me.

What people can't tell about kids with Down syndrome from looks alone
Ellen Seidman, Parenting.com, 16th October 2014
... I asked parents on social media who have kids with DS, along with family members, to share what they thought nobody can tell about their children with Down syndrome. These are the amazing responses ...

And more from Angela Lombardo, at Down Syndrome Program at Boston Children's Hospital:

DS Awareness Month #23:

 I have told this story before but I think it's a great one. A few years ago, my son sat down and told me he wished he didn't have DS. My heart crushed. Where did I go wrong? How did I raise a child who didn't love who he was? I work with 700+ families but MY own child wishes he didn't have DS? My head spun. I started thinking of testing, counseling, meetings that need to happen, etc. 

I paused so I approached him carefully and didn't trigger any more upset with my reaction to his statement. I took a deep breath and said "what part of having DS do you not like?" I pause and with a blank expression wait for his reply but my insides were melting. My dear child looks at me with this sad face and said "If I didn't have DS, I could have a TV in my bedroom and play shooting video games like Call of Duty!!" 

I sit and stare at this handsome little boy and start laughing. I tell him "those things have NOTHING to do with DS, they are because I am your mother!!!" 

He then paused and I swear he was contemplating his answer carefully and holding back how to get rid of me as his mom. I warned him to watch what he said as a reply and he laughed. 

Something so simple and I thought it was huge. It's just kid stuff. He could have said anything. He could have complained that he couldn't tie his own shoes. He could have said he was worried he would never have a girlfriend. 

I anticipated such grand concerns but no, he hated that I don't allow tv's in bedrooms and at that time and age I would not allow him to play Call of Duty. Can't blame the diagnosis for those, only can blame the momma!

... and by the way, he still has no TV in the bedroom BUT I did let him buy Call of Duty once he turned 18 years old. Funny part is he HARDLY plays it!

DS Awareness Month Post #24: 

Live and learn. I talked to the Head Coach today about the incident the other day. Asked him if it's been resolved in a manner he is happy with. He said totally. 

The coach who said the "R word" talked to Isaiah and they are all back in good standings together. I asked if he talked to other kids so they knew it wasn't acceptable and he said "he did but the kids knew it right away already" He said the kids all saw Isaiah's upset, his reaction and they knew what it was from immediately. The kids learned from Isaiah how it makes him feel. 

This coach who said the word did feel bad and now has learned. He has learned that a word he may have said without drama his whole life can hurt someone's feelings. It may have hurts others before without him knowing. Isaiah had a grand colorful way of showing he was upset. 

He banged a table, yelled and told the coach that he didn't like what was said laced with some swear words. Isaiah spoke up and reacted. The Coach got the message clearly. There was a discussion and they have moved on. A lesson for all involved even the players in the room who observed it. 

Isaiah learned the importance of speaking up for himself and his voice does count. Isaiah now will learn from me that your words don't have to be angry or laced with profanities to be heard. Emotions are hard to control when you are hurt or feel insulted and it's hard but you can advocate in a decent calm manner. You can talk. You can be calm and pull someone aside. You can be the stronger person who has control over how they appear to others. You can teach lessons about hateful words without being hateful yourself to the person who made the error. 

We want to foster relationships and educate and not create hostility or drama that may keep relationships from moving forward. 

Live and learn and live and learn and live....this process never ends if you are an 18 yr old boy or a 54 year old man.

See Angela's post from 23rd October (#20, 21, 22) for the back story to the incident she refers to here.

Latest additions to 'events' listings

Down Syndrome NSW events

Show Off! Arts Festival
Showcases people with Down syndrome involved in all aspects of the arts. The all-day extravaganza includes live performance, exhibitions and workshops across dance, drama, music, film and fine arts.

This event is for families and community members to meet, connect and be inspired.
Official opening at 10.30am followed by live performance from 11am. Workshops during the day must be pre-booked - book online here 

10am - 3pm Sunday 30 November - Riverside Theatres Parramatta


Other events

Active Ability

Seminar -on exercise for people with intellectual disability, facilitated by Northern Intellectual Disability Health. RSVP 5th November.

Monday 10 November 2014 - Cremorne 

Ageing and Disability: Are we getting it right?

The Futures Alliance and Australian Association of Gerontology (NSW Division) are again working together to explore policy, practice and lived experience where the ageing and disability sector reforms intersect.

Tuesday 11th November 2014 - Kahibah (Hunter)

Enriching lives for people with disability

Family Advocacy workshop for families - Explore typical adult opportunities by considering the individual interests of your family member. We will look at strategies for helping a person with disability to have a good life and provide the advocacy tools to make this happen.

18th, 19th, 20th, 21st November 2014 - Newcastle, Forestville, Kingsford and Wollongong

The impacts of hearing loss on children under school age: A hidden issue of vital importance.
Paint the Town REaD seminar - Professor David Ryugo, Garvan Institute and UNSW; Catherine McMahon, Audiology Macquarie University; Barbie Bates, Paint the Town REaD
Tuesday 25th November 2014 - Parramatta


2015 events

It Starts with Us!

Down Syndrome Association of Queensland - Down Syndrome Education Conference for teachers, early childhood to tertiary level, all settings. Early Bird registration is now open.
Friday 13th and Saturday 14th March 2015 - Brisbane

Research news and commentary #10 for 2014

Quality of Life: People with Intellectual Disability and Terminal Illness

Researchers at the University of New England are interested in finding out the experiences of people with intellectual disabilities who have died whether suddenly, after a short illness, or after a long illness.

We want to find out about the care and services received by the person, you and other staff and residents, his/her family and friends in the last months of the person's life.

Further information and a link to the survey are here.

Lines of Inquiry, Edition 6
Centre for Applied Disability Research, October 2014
Research newsletter.

What Are Australia’s Nurses Taught about Intellectual Disability? Results from a National Curriculum Audit

Beth Turner, Project Officer,Department of Developmental Disability Neuropsychiatry
School of Psychiatry, The University of New South Wales
Presentation to 25th PANDAA (Professional Association of Nurses in Developmental Disability) conference, 15th - 16th October 2014.  Other presentations are available from the PANDDA website here.

Sniffing out clues on Down syndromeAudrey Tan, The Straits Times, 30th September 2014
Croatian-born Dean Nizetic, 55, is professor of molecular medicine at Nanyang Technological University's Lee Kong Chian School of Medicine. His research interest in Down syndrome dates back more than 20 years, starting soon after he graduated from the medicine faculty at Croatia's University of Zagreb in 1982. Professor Nizetic then did research for his PhD thesis in molecular biology at the Max Planck Institute for Biology in Germany.

LuMind Foundation Awards $1.1 Million in Grants to Advance Down Syndrome Cognition Research

LuMind Foundation, 10th September 2014

The LuMind Foundation announces the award of $1.1 million in funding for six new LuMind Research Grants, propelling Down syndrome cognition research ... The LuMind Research Grants for 2014-2015 significantly build upon the LuMind-supported research that has led to dramatic breakthroughs in defining specific mechanisms responsible for cognitive impairment in Down syndrome, as well as the identification and pursuit of nine new potential drug targets for improving cognitive function, learning, memory and speech, involving the developmental intellectual disability, and overcoming the additional cognitive decline and neurodegeneration associated with the earlier onset Alzheimer’s disease and aging in individuals with Down syndrome ...

The Social Policy Research Centre at the University of NSW has published Self-directed disability supports: Building people's capacity through peer support and action research:

"Community Action Research Disability groups were a new way of combining research with peer support. They aimed to produce research data about self-directed disability support and build research capacity, while at the  same time benefit the people who participated, for example through peer support and advocacy. This project shows that CARDs can work well. They produced useful information from around the country about how people experience their disability support and what they want for the future. They were also useful for the group members, providing opportunities for peer support and networking, increasing self-advocacy skills and building research capacity. 

Peer support and networking seemed most important to the CARD members. The groups provided a safe, trusted place where people could exchange information and learn from the experiences of other people with disability. People’s preference for such groups in finding and sharing information is important to consider for governments, service providers and advocacy organisations in the transition to the NDIS and other self-directed support options. 

The peer support process and findings have been discussed at national and international workshops with people with disability, service providers, policy makers and researchers. Other people are using this way of sharing information or expanding the way they run peer support based on the lessons from this research."

Purcal, C., Bevan, N., Cooper, S., Fisher, K. R., Meltzer, A., Wong, M., & Meyer, P. (2014). Self-directed disability support: building people’s capacity through peer support and action research [Final report] (SPRC Report 7/2014). Sydney: Social Policy Research Centre, UNSW Australia

Down Syndrome NSW e-Update, August 2014 #2 

The Compose Study is recruiting participants
Compose (Cognition and Memory in People with Down Syndrome) is a clinical study that will assess the safety and potential efficacy of a compound that could enhance memory, language and learning in people with Down Syndrome.

• Website: www.compose21.com
• Contact: www.facebook.com/compose.study or call 1300 659 729

7th Down Syndrome World Swimming Championships: Mexico, next week

The 7^th Down Syndrome World Swimming Championships will be held in Morelia, Mexico, from 7 to 15 November 2014. 

The Australian team of 24 swimmers leaves for Mexico on 29th October and their progress and success can be followed on Down Syndrome Swimming Australia.

Swimmers come from all around Australia, although most of them are Queenslanders. This is not to say that Queenslanders are better swimmers, but perhaps disability swimming is bigger there. 

The two NSW swimmers are Lucy Dumitrescu and James Lawrence. Lucy is one of the team captains. Congratulations on your selection. Team photos are here.

It is fantastic to see all these young athletes willing to put in the time and effort to train to this level.

Perhaps one day there will be a disability category for Down Syndrome athletes at the Paralympics.The Down Syndrome International Swimming Organisation is  trying to make this happen at the moment. 

Down Syndrome Swimming Australia is trying to show the professionalism and ability of our athletes to the swimming bodies here in Australia.

Follow the team in Mexico via the Down Syndrome Swimming Australia Facebook page and their website - you can send a herogram from here.  Messages will be collected and read out to the swimmers by the support team every day while in Mexico. Herograms are a great way to encourage the swimmers! They love receiving messages from home during the competition or from people they know. Spread the word to friends, supporters and people in your individual networks so others can send Herograms too. All Herograms will be available to families (from the website) on return from Mexico.

Good luck Team Australia, and safe travels - we will follow the competition and cheer you on.

Position Vacant at Down Syndrome NSW

Down Syndrome NSW: Administration Position
We currently have an Administration position open for 3 days / 18 hours per week (Mon – Wed). This is a casual position with the view to becoming permanent part time.

Essential required skills include: Excellent Microsoft Office skills, knowledge of MYOB, excellent communication skills and the ability to work in a team environment.

Preferred skills: understanding of advocacy for people with disability.

More details available here
If you would like further information about this position, please email Scott Bridges at scott.bridges@dsansw.org.au

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

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                         E: CommsTeam@carersnsw.org.au Please advise dietary requirements when registering to attend. Please see event flyer here.

Down syndrome awareness ... and beyond (6)

A few words from and about siblings ...

My sister has Down syndrome - it doesn't matter to me

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 ...

That's All I Need": Down Syndrome and Sibling Relationships

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? ...

I’d Have It No Other Way

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 www.legislation.nsw.gov.au

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 here. The closing date for feedback is 5pm on 27 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!

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

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 wwdact@wchm.org.au

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.