Adult siblings: SBS 'Insight'

Siblings Australia posted on Facebook on 19 May about an opportunity for siblings to contribute to an episode of Insight on SBS TV:

SBS TV’s Insight program wants to know what’s it like growing up with a brother/sister with a disability and would love to hear from siblings. 

Please contact rose.hesp@sbs.com.au All conversations confidential. If you talk to Rose it doesn't mean you will be invited to be in the audience and you can also say you are willing to talk with her but NOT go on the show if you prefer. 

The program is currently scheduled to be pre-recorded on Tuesday, 20 June, 7pm – 9pm at the SBS TV studios in Artarmon, Sydney. It will be broadcast soon after on a date to be announced. 

For more background information, visit the Facebook post, or email Kate Strohm at Siblings Australia kate@siblingsaustralia.org.au

Event for adult brothers and sisters: Sydney

A gathering of adults who have a sibling with Down syndrome. Enjoy a get together, support each other and make friends:

Mr Tipply's - The Attic Room 

347 Kent Street (cnr King St) Sydney 

5.30 - 10.30 pm Friday 19 May 2017 

No cost - food and drinks available for purchase 

To register contact Down Syndrome NSW:

• ph 9841 4444

• email admin@dsansw.org.au

• register online here

Siblings Australia: Adult Sibling Survey

Please help to spread the word about this survey from Siblings Australia:

Are you a sibling of someone with disability? *

Siblings Australia would love to hear from you!

Or do you have an interest in people with disability? We hope you will spread this information amongst your networks so we can reach as many adult siblings as possible.

This survey is part of Siblings Australia’s new project - Creating Capacity: Support for Adult Siblings. The survey will help us make decisions about the project and let us know what you want.

It also gives you an opportunity to get involved in the project.

The project is about adult siblings of people with disability. Adult siblings are brothers or sisters of people with disability who are 18 years of age or older.

The project will develop online resources for adult siblings about the NDIS and the different roles that siblings might play in supporting their brother or sister with disability. It will also develop opportunities for peer support and mentoring between adult siblings.

Siblings Australia is a national organisation that is committed to improving the support available for siblings of children and adults with disability, chronic illness and mental health issues.

Please click on this link which will take you directly to the survey.

We hope to have all responses by early December 2016, and we would appreciate you completing the survey as soon as possible. Please pass on the survey to any sibling of a person with disability who you think will be interested in taking part

We will shortly be sending out information about volunteering to be a Peer Support Group leader. If you are interested in this, please click the link in the comments below to join the Siblings Australia email alert and we will keep you informed.

If you would like more information, please contact Kate Strohm, Director Siblings Australia on kate@siblingsaustralia.org.au

*In this context, the word disability includes people with disability, chronic illness and mental health issues.

Brothers and sisters ... the longest relationship most of us will ever have

Brothers and sisters of people with Down syndrome, generally report very positive relationships, but we can't assume that everyone doesn't have some difficulty at least some times. For some, the relationship might often be fraught, depending on circumstances. If you would like information on supporting siblings across all age groups, the Down Syndrome NSW library will be able to assist. Contact library@dsansw.org.au

8 Things I Wish Parents Understood About Being a Special Needs Sibling

Siena Ruggeri, The Mighty, 9th November 2015
When I connect with other siblings, we typically agree there are some serious misconceptions about our lives. I believe the disabled community needs a bigger discussion on how to best address the needs of siblings, too. By sharing my perspective, I aim to help parents and caregivers better understand the sibling experience ...

Mom Writes The Most Priceless Letter To Siblings Of A Special Needs Child

Hrtwarming, 9th July 2015

... Did you know your parents watch you and your sibling's interactions on a daily basis and their heart literally wants to burst our of their body with pride and love? They notice ...

Is this a 'pity party'?

Kate Strohm, Siblings Australia (blog), 22nd October 2015
The following was written by a parent of a person with disability on a social media discussion group re disability.

I have heard this garbage of the 'poor siblings' and how hard they have it several times in the past and my response will remain the same: What is so hard about it? What is hard is for anyone to have such self-centred siblings who are so focussed on their own little pity party about their 'hard' life! Yes children (Persons under 18 years of age) who are siblings of a child with disabilities should have support but ….

I hear this type of sentiment over and over and it saddens me for so many reasons ...

Siblings Australia: Sydney forum for adult siblings

Expression of Interest Adult Sibling Forum Sydney

Siblings Australia is planning, along with other committed agencies, to host an adult sibling forum in Sydney in late June 2015.

We are seeking expressions of interest to determine if the forum will go ahead. You can access the details via this flyer.

Visit the  Siblings Australia events page to complete an online Expression of Interest.

Sibling Support Group - Hills district (Sydney)

SibWorks is a 6 week program for 8-12 year olds who have a sibling with an intellectual disability. Each week the group will cover a different theme relating to their relationship with their sibling with special needs. The program aims to provide an opportunity for kids to have a fun experience, connect with other siblings, better understand their brother or sister’s special needs, share their feelings with others who understand, develop coping skills for the future and much more.

Fridays 1 May – 12 June 2015
4pm – 5:30pm

Interaction Head Office, B2/ 11 Hudson Avenue, Castle Hill NSW 2154

Cost: $20 per child for the 7 week program (afternoon tea will be provided)

More info: Call Giselle Tadros, Clinician/Psychologist on 1300 668 12 or emailtabiss@interactionservices.org

What siblings are saying

Every family questions how brothers and sisters will be impacted by one of them having a disability, the fact of the disability, the impact on everyday life, and of course their life long experiences. Sibling relationships are likely to be the longest that our sons and daughters with Down syndrome will have, so of course we are interested in what they have to say about each other - it's not always what you expect:

We’ve all had the flu! (A sibling’s take on Down syndrome)

Essential Take on Life, 18th November 2014

Before I tell my story, I should probably mention a bit about my family. Because, let’s face it – being an older sister is not the same as being a younger sister, or being a brother …

10 Things Siblings of Individuals With Down Syndrome Wish You Knew

Katie Grace, The Mighty, 21st November 2014

... Just as every individual is unique with or without Down syndrome, every family dynamic is unique. My story might not be in line with every sibling to a person with Down syndrome, but I believe many of us having more than a few of these qualities in common ...

Dear Parents of Children With Special Needs - From a Sibling

Christina Breshears, The Mighty, 31st December 2014

... you should also know that the beautiful compassion and empathy siblings have for their sibling (and for the world) is at first solely directed at you. We first feel compassion for you as we see you work and love and attend. We first express empathy for you as we take up what jobs we can to help with the task at hand ...

The North Side of Down, by Nancy and Amanda Bailey

Jisun Lee, Kimchi Latkes, 26th January 2015

A new book, written by a woman with Down syndrome and her sister, is reviewed by the mother of a young child with Down syndrome.

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.

What about their brothers and sisters?

All families are concerned about sibling relationships. 'Our' new families often want to know how one child having Down syndrome will impact on his brothers and sisters.  

Sometimes - quite often, actually - it's like this:

Graduating WSU senior pursues links between Down syndrome, Alzheimer's

Marcia Ratliff, Winona Daily News, 9th May 2014
... Noterman’s research concerns connections in the brain, specifically relating Down syndrome with Alzheimer’s. Fifty percent of people with Down syndrome get Alzheimer’s, so Noterman wanted to find out more about how brains with those diseases function differently. She has additional interest in Down syndrome, because her 16-year-old brother, Willie, has the condition ...

My brother, Jon

David Will, The Daily Princetonian, 29th April 2014
My oldest brother, Jon, is 41 years old and has Down syndrome. I’ve never shied away from explaining his condition to strangers. In fact, I am proud of all he’s accomplished in spite of his condition. But when a friend uses “retard” or any variant of the word, I usually just let it roll off my back, even though it stings every time. In doing so, I’ve been a coward ...


Disability is a funny word
Tommy Harris, Apostrophe, 23rd April 2014
... From the outside looking in, some might think that because of Tim, our lives are not “normal.” I couldn’t begin to say how wrong they would be ...

Newcastle Young Carers

Newcastle Young Carers is a new support group for young carers aged between 15-25 years from all different backgrounds.

A young carer is anyone who lives with a child or an adult with a disability ... for instance it may be a sibling or a young parent.

The group is aiming to get together and catch up once a month within an area from Port Stephens, Maitland, Newcastle and the Central Coast.

To subscribe to the mailing list or join the support group simply email: youngcarersnewy@gmail.com and can find the group on Facebook, here.

Library Thursday: 10th April 2014

New in our collection
Equity and Full Participation for Individuals with Severe Disabilities - A Vision for the Future, Martin Agran et al (eds), Paul Brookes Publishing, 2013

What key issues and challenges affect the lives of people with severe disabilities today—and what should tomorrow’s professionals do to address them? 

Aligned with the core values and agenda of TASH, this visionary text prepares professionals to strengthen supports and services for people with disabilities across the lifespan. Readers will fully examine more than a dozen critical topics in the lives of people with severe disabilities; explore necessary reforms to policy and practice; and set clear goals and priorities for improving early intervention, education, health care, behavior supports, and social services.  

Whether used as a textbook or a professional reference, this innovative volume will help usher in a new era of services that support full inclusion and quality of life for people with severe disabilities.

Siblings: 2nd edition
A new edition of Siblings, by Kate Strohm has been released in print and as an e-Book available from Siblings Australia or Wakefield Press.

Members' library

The Down Syndrome NSW library catalogue is available to view here.  

• To contact Jo at the library, ph. 9841 4410, or email library@dsansw.org.au

Expertise for siblings

ExpertBeacon is US website aiming to provide expert advice and assistance to consumers over a range of topics.  Their 'Raising kids with special needs' section has recently published two articles from experts at the Massachusetts General Hospital Down syndrome program addressing matters of interest to siblings:

Helping sibs of kids with disabilities manage embarrassment
Brian Skotko and Susan Levine, ExpertBeacon, 12th September 2013

All sibling relationships are almost guaranteed to involve a humiliating moment or two. However, when you have a brother or sister with intellectual disabilities, you become more aware of the reactions of others. Does your sister embarrass you because of her disability? Are people noticing her--and you--because of her appearance? ...

Helping sibs advocate for people with intellectual disabilities
Brian Skotko and Susan Levine, ExpertBeacon, 19th September 2013
Brothers and sisters across the country are realizing that they can make a difference on behalf of their siblings with intellectual disabilities. Do you want the world to recognize all of the talents that individuals with disabilities have? Is there an injustice that you want to correct? Perhaps you are looking to become more involved in the lives of people with disabilities through volunteer service?

If you are having these ideas and feelings, you can become an advocate of people with disabilities. Advocates spread the truth, correct misconceptions, and stand up for the things they believe in. There are countless ways that you can become an advocate for disabilities ...

(Almost) Wordless Wednesday: twins

Website of the Week: Young Carers NSW

From the Young Carers NSW website:

• There are around 347,700 Australians, under the age of 25, providing care to a family member who has a long-term illness or disability? (5.2% of all people under 25)

• The Young Carer Program at Carers NSW was developed to make a positive difference to the lives of young carers and their families.

• Young Carers are children and young people, 25 years or under, who help to support a family member or friend who has a disability, mental illness, drug or alcohol dependency, chronic condition, terminal illness or who is frail.

The aims of the Young Carers NSW Program:

• Promote the issues and needs of young carers through statewide programs 
• Develop a young carer support network in partnership with relevant agencies, services and schools 
• Coordinate a variety of young carer activities in the short term 
• Support referrals to local services who can assist young carers and their families 
• Develop and distribute other appropriate resources 
• Review and evaluate existing support activities

A screen from the  Young Carers NSW website

The Young Carers NSW website provides an enormous amount of information about events, projects and resources for young carers, such as siblings.

• Young Carers at Carers NSW on Facebook
• Carers NSW Biennial Conference 14th - 15th March 2013

Carers Australia launched its own Young Carers website in 2012, designed to support a different audience:

"The website is specifically designed as an information resource for professionals such as teachers and service providers and members of the community who may be in contact with young people who have caring roles," NSW Minister for Disability Services, Andrew Constance said at the launch.

"We want to ensure that young people receive the supports they need especially in relation to balancing their education and recreation with their responsibilities as a carer."

Young Carers (Australia) website, launched in October 2012

Wordless Wednesday

Siblings, young people and disability study: University of NSW, recruiting now

The Social Policy Research Centre at the University of NSW has launched a website inviting young people with disabilities and their siblings to participate in a new research project, the Siblings, young people and disability study.Detailed information about the study, its aims, how it will be conducted, who can take part (and how), and the relevant ethics approvals and consent documents are available from the website.

The researchers are particularly aware of the need to support people with intellectual disabilities and communication disorders who wish to take part.  An 'Easy Info' page is provided. This information is from the 'Who can take part?' page:

Who can take part?

• People both with and without disabilities can take part.

You can take part if you fill all of the points below:

• You have a brother or sister.
• Either you or your brother or sister have a disability.
• We want to hear from people with all different types of disabilities, but also want to make sure that people who have often been left out of research can take part. If you have a disability that affects speech or an intellectual disability, we will work with you to find the best way for you to take part.
• Both you and your brother or sister are aged 16 to 25.
• You live in Australia.
• Depending on where in Australia you live, there are different ways to take part

Siblings, young people and disability study website

Library Thursday: 20 tips from siblings

20 Things Siblings Would Like Parents and Service Providers to Know, by Don Meyer and Patricia Vadasy, an excerpt from their book SibShops, is online at Children with Special Needs on About.com   

Sibshops, by Don Meyer and Patricia Vadasy is available for Down Syndrome NSW members to borrow, from our library.

Our collection of books and DVDs for siblings is listed here.

My Great Big Adventure: 'Disability' now on iView

Saturday's episode of My Great Big Adventure on disability (episode 8) is now available online on ABC's iView, until the end of the year:

• Click here to view it on computer
• Use the iView app to view via iPad (listed under ABC 3 programs)

Duration: 20 mins.

My Great Big Adventure: Disability, ABC3, 4.40pm Saturday, August 25

Hosted by ABC3's Kayne Tremills, My Great Big Adventure tackles some of the most pressing issues kids face today, such as bullying, family conflict and everyday stress. 

By sharing real stories from kids and celebrities, the series sends a message that, no matter how difficult the challenge, with the right tools there's always a way to make your own big adventure better. 

My Great Big Adventure:  Disability, ABC3, 4.40pm Saturday, August 25

Approximately 1 in 5 people in Australia are living with a disability. While we know disability can hinder people in certain ways, we can also celebrate the fact that it enhances them in others. Living with a disability is not something to fear or shy away from - amazing potential is present in all of us, no matter what our capabilities! We explore what disability is, what it means for people, and discover the great achievements made by people and groups with disabilities.

In this episode, Kayne hangs out with Tom Green from Dance Academy, and his younger brother Ethan who has Down Syndrome - we get to see what it's like being part of the Green family, and what it means to have a sibling with a disability.

Kayne also meets a couple of incredible elite athletes 14-year-old wheelchair racer Rheed McCracken and paralympic champion Kurt Fearnley. Rheed and Kurt talk about what disability really means to them, and how they've pushed and challenged themselves to achieve their dreams of becoming champions!

Source: www.abc.net.au/abc3/mygreatbigadventure/

Siblings Australia directory

Siblings Australia is developing an online directory of services available to siblings of people with disabilities and long term illnesses.  Services are listed State by State, and further listings are invited.