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.

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 3000.com, 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.

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

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

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

Citizenship

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

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

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

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

Bismarck parents buy coffee house for son’s future

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

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

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

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

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

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



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

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 stepup@dsansw.org.au

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.

'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:

‘I am different, that is good’: how an actor with Down’s syndrome is changing perceptions

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 ...

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 ...

• Beach Center on Families and Disability

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 ...

Down syndrome: what is the current focus of research?

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 ...

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 Commsteam@carersnsw.org.au 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."

• Direct link to Caring Into Old Age: The wellbeing and support needs of parent carers of people with disabilities

• Anglicare

• Carers NSW 

• NSW Ageing, Disability and Home Care

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 

communitycentre@coastcommunityconnections.com.au

Coast Community Connections

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 ...