Down Syndrome Australia's Quarterly Newsletter: June 2017

The latest issue of the DSA Quarterly Newsletter has been released today. You can subscribe, free of charge, by emailing info@downsyndrome.org.au

In this issue:

Down Syndrome Australia's New Patron
Down Syndrome Australia is pleased to announce that the Governor General, His Excellency General the Honourable Sir Peter Cosgrove AK MC (Retd), has agreed to be Patron for Down Syndrome Australia.

We are very honoured that he has agreed to take on this role and look forward to working with him to raise awareness about the issues that matter to people with Down syndrome.

World Down Syndrome Day Wrap Up Get Ready for Step UP! Disability Support Pension (DSP) Information, Linkages and Capacity Building National Disability Insurance Scheme (NDIS) DSA Director Finalist for Western Australian of the Year awards Current Consultations on Antenatal Guidelines Research Opportunity: The Perspective and Experiences of Families Raising a Child with a Genetic Condition Voice

Latest issue of International Journal for Direct Support Professionals: Understanding Pain

OUCH! How Understanding Pain can Lead to Gain when it Comes to Supporting Those with Developmental Disabilities
Lara M. Genik, Tamlyn Freedman-Kalchman, C. Meghan McMurtry, and Yona Lunsky, International Journal for Direct Support Professionals,  Vol 6 #5, May 2017

... For many years, people have wondered if individuals with DD experience less pain, more pain, or experience it differently than those without DD. Some people even wondered if those who engage in self-injury didn’t feel pain. Researchers have been trying to find out the answers to these questions, but still aren’t totally sure. We do know that people with DD may respond more slowly to pain and express it differently than those without DD. We also know that even people who self-injure can feel pain. And most importantly, we know that true insensitivity to pain is extremely rare. So, as direct support professionals we should always assume that the people we support can feel pain ...

• The subscription to this Canadian journal is free. Email the editor, Dave Hingsburger at dhingsburger@vitacls.org to subscribe.
• Back issues are available to download here

New books

Not Always Happy,
Kari Wagner-Peck, Central Recovery Press, 2017

While most people meet their child for the first time in a delivery room, some parents have to meet their child in the reception area of an administrative building.  

Not Always Happy is a humorous and sharp chronicle about adopting and raising a son with Down syndrome from the Maine foster care system. The author quickly learns that life is best lived by expecting the unplanned when she makes the decision to become a parent in her late forties. As her unconventional family moves along in this life, she and her husband are less aware they are raising an atypical child or an adopted child. They are raising their child, and their family struggles with the same universal themes that any family goes through ...

• Due for release 16 May 2017 in print and as an eBook

The Lucky Few: Finding God's Best in the Most Unlikely Places

Heather Avis, Zondervan, 2017

When I started my journey into parenthood I never thought it would look like this. I never planned on having three adopted children, and I certainly never imagined that two of them would have Down syndrome ... It’s only the lucky few that recognize that the most beautiful things in this life are often found in the differences. What some would see as misfortune, I’ve learned to see as nothing more than pure luck.

Down's Syndrome Screening and Reproductive Politics: Care, Choice, and Disability in the Prenatal Clinic
Gareth M. Thomas, Routledge, 2017

In the UK and beyond, Down’s syndrome screening has become a universal programme in prenatal care. But why does screening persist, particularly in light of research that highlights pregnant women’s ambivalent and problematic experiences with it? 

Drawing on an ethnography of Down’s syndrome screening in two UK clinics, Thomas explores how and why we are so invested in this practice and what effects this has on those involved. Informed by theoretical approaches that privilege the mundane and micro practices, discourses, materials, and rituals of everyday life, Down’s Syndrome Screening and Reproductive Politics describes the banal world of the clinic and, in particular, the professionals contained within it who are responsible for delivering this programme. In so doing, it illustrates how Down’s syndrome screening is ‘downgraded’ and subsequently stabilised as a ‘routine’ part of a pregnancy. Further, the book captures how this routinisation is deepened by a systematic, but subtle, framing of Down’s syndrome as a negative pregnancy outcome. By unpacking the complex relationships between professionals, parents, technology, policy, and clinical practice, Thomas identifies how and why screening is successfully routinised and how it is embroiled in both new and familiar debates surrounding pregnancy, ethics, choice, diagnosis, care, disability, and parenthood. 

The book will appeal to academics, students, and professionals interested in medical sociology, medical anthropology, science and technology studies (STS), bioethics, genetics, and/or disability studies.

This one is not new, but NSW CID has stocks available for sale:

Forgotten and Found
Kim Walker, NSW Council for Intellectual Disability

Written by NSW CID Life Member Kim Walker, this book tells her story from childhood, to institutions, to community life and to becoming an amazing advocate! 

Kim tells us the story of her life to explain why no child should grow up in an institution and separated from family. Kim’s story provides a powerful case for what she always wanted – all disability institutions to be closed and all people with disability to have a good life in the community ...

Priorities for action: Human Rights Commission

Shaping our future: discussion on disability rights
Human Rights Commission, 6 April 2017

Between October 2016 and March 2017 Disability Discrimination Commissioner, Alastair McEwin conducted a national consultation to help guide his priorities and seek input from the disability community on how he can most effectively work to advance the rights of people with a disability ... The Disability Discrimination Commissioner has identified the following priorities for his term:

• Employment
• Education
• Housing
• The criminal justice system
• Implementation of the National Disability Insurance Scheme (NDIS)
• Violence

A series of text transcripts, videos and infographics summarising what the Disability Discrimination Commissioner heard during his national consultations about each of these priorities is now available on the Human Rights Commission's website. A more detailed roadmap outlining actions for the Disability Discrimination Commissioner's term will be released later this year.

'Voices from a silent journey': International Journal for Direct Support Professionals

Voices from a silent journey
Melodie Cook, International Journal for Direct Support Professionals, Vol 6, #4, April 2017

... People with intellectual disabilities are often socially withdrawn whether they communicate verbally or not. This has nothing to do with their ability to contribute but has lots to do with our social world which tends to value verbal communication which is fast paced ...

This free Canadian journal is also available in French, and all back issues are available online here. Each issue deals with a single topic.

Voice: March 2017

Down Syndrome Australia publishes the print-only national journal Voice three times a year.

Subscription to the national journal is a membership benefit, and is included in the membership fees of Down Syndrome New South Wales, Down Syndrome Victoria, Down Syndrome Western Australia, Down Syndrome South Australia, Down Syndrome Tasmania and Down Syndrome Association Northern Territory.

Enquire about membership/subscription with your local Sate Down syndrome organisation (links above).

You can also subscribe online. The target readership is member families of state and territory associations but the publication is expected to also be of interest to practitioners and professionals whose work brings them into contact with individuals with Down syndrome.

In the March 2017 issue released this week:

• Functional mathematics
• My Time
• The NDIS can make dreams come true
• Stop saying that!
• Discrimination travels in disguise
• The heart of the matter
• Last word: a str is born
• Last word: just being Dad

Selected articles online

After each issue is released, selected articles are featured on the DSA website, giving you access to them wherever you are, and making it easier to share those articles with others.

Books

I Don’t Want To Read Books That Treat Disability As A Tragedy
Anne Susiak, Huffington Post, 2 February 2017

My twin brother, Jack, has cerebral palsy, hydrocephalus and epilepsy, and although I hardly ever came across disabled characters in fiction I never came across witches and wizards in real life, either ...

The Label, Caroline White, illustrated by Sandra Isaksson, Ivy Press, 2016

Being a new parent is nerve-jangling enough as it is, but what happens if your baby is not what you were expecting? How do you deal with the conflicting feelings, a heart assailed by overwhelming love and overwhelming fear, guilt and anxiety as your expectations are rerouted? This happened to Caroline White. So she pulled together her contrary emotions - the good, the bad and the ugly - and spun them into a poignant and uplifting fable, an inspiration for all new parents who find themselves stumbling along an unfamiliar and unanticipated path. Written with great honesty and love, The Label is anchored by a simple yet powerful central image, a metaphor for all that is limiting and prescriptive, and explores what happens when you let the label go and watch as your child blossoms into their best life untroubled by negative expectations ... publisher's note.

• Caroline White's blog post at Force of Nature - the book was released on 29 December 2016.

We posted about this new book here when it was published a few months ago, and  and here with a link to a radio interview. This link is to a recent newspaper interview with Michael and Jamie Bérubé:

Father tells the next chapter in son’s story, Frank Ready, Centre Daily News, 27 January 2017
... “Life as Jamie Knows It” addresses growing up in all of its complexities, from the natural evolution of family dynamics to the limited work scape that’s awaiting people with intellectual disabilities. 

It’s great pitch material — but not particularly commercial ... 

“This was a harder sell because when you’re dealing with intellectual disabilities, people would rather hear about kids than adults,” Michael said ...

Read more here: http://www.centredaily.com/living/article129089444.html#storylink=cpy

Book review, summary of 2016 publications

Supporting Positive Behavior in Children and Teens with Down Syndrome, David Stein, Woodbine House, 2016

Reviewed by Disabi(LIT)y, 4 January, 2017

... 'Supporting Positive Behavior in Children and Teens with Down Syndrome' has managed to allay some of the feelings of isolation, and it’s helped me to understand where Finn’s negative behaviors come from, and how to effectively minimize them ...

Other books specifically about people with Down syndrome, published in 2016:

The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood, Jennifer Jacob and Mardra Sikora, Adams Media, 2016

Sing Fox To Me, Sarah Kanake, Affirm Press, 2016

Entwined : Sisters and Secrets in the Silent World of Artist Judith Scott, Joyce Wallace Scott, Beacon Press, 2016

Prince Noah and the School Pirates, Silke Schnee, Illustrated by Heike Sistig, 2016

Fine Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals, Third Edition, Maryanne Bruni, Woodbine House, 2016

Voice subscription and selected articles online

Voice is the journal of Down Syndrome Australia, published in May, August and December. Subscription to the print edition of the national journal is included in the membership fees of state and territory associations. 

Subscriptions and access to selected articles are now available more widely.

You can now take advantage of a new feature and subscribe online. The target readership is member families of state and territory associations but the publication is expected to also be of interest to practitioners and professionals whose work brings them into contact with individuals with Down syndrome.

Selected articles online

After each publication is released, some favourite articles will now be featured on the DSA website, giving you access to them wherever you are, and making it easier to share those articles with others.

For example, from the July 2016 issue of Voice, one of the articles released online is Rachel Kroes's (Executive Officer, Down Syndrome Association NT), Sharing the journey - travelling outback:

... The key to development of services and growth in understanding about Down syndrome in Aboriginal culture is to visit often, as communities are well aware of the many services that appear and then disappear. One needs to be consistent, seek out the same people, follow a similar routine each visit and be open to the total unpredictability of remote life. Then, quietly, respect and trust solidifies. Hearts and conversation open and we hear such similar concerns and fears as confided to us by our families in urban Darwin. The geography is immaterial – these mums and dads express their love and concern for their children in ways similar yet unimaginable to city dwellers ...

Book reviews

Book review - 'The Shouted Goodbye' by Jeremy Ward

Jim Simpon, NSW CID,

Jeremy Ward's personal memoir of raising a child with a disability, The Shouted Goodbye is the story of his daughter, Mena, who grabbed all of life’s opportunities, and his and his wife's determination that she have a full and inclusive life.

This is a must-read book for anyone who believes in a fully inclusive world for people with disabilities. It should also be compulsory reading for the many teachers, disability workers, bureaucrats and politicians who need to better understand and embrace this vision ...

• Boolarong Press

Book Review: My Heart Can’t Even Believe It – A Story of Science, Love, and Down syndrome

Amy Silverman, Woodbine House, 2016
Review by Dotty Robison, Federation for Children with Special Needs, Summer 2016
This book is heartfelt and almost gritty in its honesty. Amy Silverman, journalist and parent of a daughter with Down syndrome, bares her soul in her personal reflections on topics from the moments after her daughter Sophie was born, to thinking back to the weeks before her birth when she knew Sophie might have Down syndrome ...

Journal of Mental Health for Children and Adolescents with Intellectual and Developmental Disabilities: An Educational Resource Volume Seven, Issue 3/4, December 2016

The NSW School-Link Initiative has been addressing mental health in schools since 1999. The Children’s Hospital at Westmead (CHW) has recognised the potential to further develop the existing School-Link Initiative by focusing on students with an intellectual disability.

The latest edition of the Journal of Mental Health for Children with Intellectual and Developmental Disabilities is now available on the School-Link website.

Highlights include:

• The Future of Our Children’s Mind, Spirit and Soul: Will the digital revolution destroy them or can schools grow them? by David Dossetor 
• Notes from the 19th Society for the Study of Behavioural Phenotypes (SSBP) International Research Symposium by Peter Wurth 
• The Medicine Cabinet: Atomoxetine by Judy Longworth 
• Addressing cardiometabolic risk factors in people with an intellectual disability by Jessica Walsh, Professor Katherine Samaras and Professor Julian Trollor 
• The 15th World Congress of the International Association for the Study of Intellectual and Developmental Disabilities (IASSID) by David Dossetor 
• IASSID Symposium on Quality of Life in Children with Intellectual Disability by Donna White 
• A report on the inaugural meeting of the Bowral Mental Health Intellectual Disability Professionals Network 
• Resource Spotlight: Carer Checklist by Carers Australia 
• KidsQuit 

School-Links encourages readers to circulate this link to your networks or anyone else who may be interested and to sign up to the e-list.

New books from Woodbine House

New titles recently released by specialist publishers Woodbine House:

Whole Child Reading: A Quick-Start Guide to Teaching Students with Down Syndrome and Other Developmental Delays 

Natalie Hale, 2016

Discover the keys to teaching children and adults with Down syndrome and other developmental disabilities how to read for meaning. Written for today's busy parents and teachers, this easy-to-use guide explains how to "go in through the heart" to hook beginning and struggling readers with high-interest, individualized materials—flashcards, personal books, and modified trade books. The simple strategies described are designed to "teach to the brain" and are based on research about how we learn most easily and naturally ....

• Kindle/eBook and paperback editions are available. 

Fine Motor Skills for Children with Down Syndrome: A guide for parents and professionals

Maryanne Bruni, third edition, 2016

The popular book, Fine Motor Skills for Children with Down Syndrome is now available in a completely revised third edition. The author, an occupational therapist and parent of an adult with Down syndrome, describes how the characteristics of Down syndrome can impact the acquisition and progression of fine motor skills. She presents a thorough overview of the building blocks of fine motor development, from infancy through to adulthood ...

• Paperback 

Woodbine House does not accept orders to ship to Australia, but other sources are readily available that ship to and within Australia.

Down Syndrome International: e-newsletter launched

The first issue of DSi News has been launched by from Down Syndrome International.

It will be a regular e-newsletter summarising DSi news for members and supporters, and also giving members a way to communicate their news with other DSi members, the global Down syndrome community and beyond.  Sign up for a free online subscription here.

The Art of Holding Space: Service Support and Success Vol 5, #12

Congratulations to Dave Hingsburger and Angie Nethercott, the editors and publishers of the online journal for direct support workers, Service, Support and Success, on completing their fifth year of publication! The journal is distributed internationally without charge. 

The final issue for 2016 focusses on the concept of 'holding space':

The Art of Holding Space
Kevin Alexander, Service Support and Success, Volume 5, Issue 12, December 2016
... As a direct support professional, I am always challenged with wanting to step in and do something for someone I support. I see them struggling with a task, and I immediately want to make it easier for them. I want to feel needed and do a good job.

However, I have learned over my career that doing tasks for others is not always the best option. Sometimes doing less is helping out more.

If we do everything for someone, then that individual never learns how to do anything for themselves. The absence of failure and struggle are great losses in a person’s life ...

• Each issue is also available in French - this one is here.
• Link to back issues of Service, Support and Success on the Vita Living Services website, here, including Vol 1 Issue 1 and Vol 1, issue 2, which are both about supporting people with disabilities through the holidays.

Accessible Arts Newsletter: November 2016

Accessible Arts November news is full of great announcements and opportunities for the arts and disability sector in NSW:

• InternationalDay of People with Disability
• Sydney New Year's Eve for everyone
• Don't DIS my ABILITY 2016
• 2017 Artist with Disability Fellowship
• Performing Arts Summer School 2017
• Events
• Featured arts + disability videos
• Auslan Interpretation of eNews
• Accessible Arts | Facebook | Twitter | Instagram

Voice: November 2016

Down Syndrome Australia publishes the print-only national journal Voice three times a year.

Subscription to the national journal is a membership privilege only, and is included in the membership fees of Down Syndrome New South Wales, Down Syndrome Victoria, Down Syndrome Western Australia, Down Syndrome South Australia, Down Syndrome Tasmania and Down Syndrome Association Northern Territory.

In the November 2016 issue released last week:

• Is this the right service for me?
• Baby steps to independent living
• Preparing for supported living
• In dependent living - from Jesse's dream to our reality
• Independent living - living in rural Tasmania
• Protective behaviours
• NDIS and you
• IASSIDD workshop review
• Endocrine conditions in Down syndromeOur Voice
• My Voice
• Book Review
• Our adoption story

Enquire about membership/subscription with your local Sate Down syndrome organisation (links above).

Service, Support and Success: November 2016 issue

Service, Support and Success is a monthly international journal for direct support professionals, published in Canada. Each issue features a single substantive article focussed on a practical aspect of direct support.

As more staff are recruited to support people with disabilities with funding from the National Disability Insurance Scheme, they will be interested in locating such good quality resources, to establish good practice, and as education and training resources.

The journal is available free via email subscription or through a website (link below). Here is the link to the latest issue:

Deeply Frank: Getting Serious About Person-Centered Thinking 

Celine Parent, Tammy VanderWier, Elizabeth Wedderspoon, Service, Support and Success, Vol 5, Issue 11, November 2016
... What about if things change? What do we do if someone we support decides that they want to take a college class? Or join the local gym? How can we help them turn the unfamiliar into the familiar? How do we help them learn the routines and the social norms of this new place so that they can feel comfortable? ...

Answers to FAQ’s about the journal

1) The journal is intended to be widely distributed; you do not need permission to forward. You do need permission to publish in a newsletter or magazine.

2) You may subscribe by sending an email to dhingsburger@vitacls.org

3) We are accepting submissions. Email article ideas to either the address above or to anethercott@handstfhn.ca

4) We welcome feedback on any of the articles that appear here.

• Link to back issues of Service, Support and Success on the Vita Living Services website, here. Each issue is now available in both English and French. 

Service, Support and Success: October 2016 issue

Service, Support and Success is a monthly international journal for direct support professionals, published in Canada. Each issue features a single substantive article focussed on a practical aspect of direct support.

As more people manage their own support via the National Disability Insurance Scheme, they will be interested in locating such good quality resources themselves, to establish good practice,  and as education and training resources for the professionals they employ.

It is available free via email subscription or through a website (link below). Here is the link to the latest issue:

In Case of Emergency, Please Read: Ideas and Strategies for Supporting People with Intellectual  Disabilities Receiving Emergency Care 
 Yona Lunsky and Jacques Lee, Service, Support and Success, Vol 5, issue 10, October 2016
Adults with developmental disabilities visit the hospital emergency department (ED) as often as some of us go to the dentist. In fact, they go twice as often as adults without developmental disabilities (DD). We all know the “drill” when it comes to the dentist, but just how much do you know about what to expect out of an emergency department visit? This article offers some practical tips about how to make emergency visits as good as they can be, and also outlines some steps we can all take to reduce the likelihood of having to go to the hospital in the first place. Because, let’s be honest; like the dentist, none of us want to go the hospital more than we have to...

Answers to FAQ’s about the journal

1) The journal is intended to be widely distributed; you do not need permission to forward. You do need permission to publish in a newsletter or magazine.

2) You may subscribe by sending an email to dhingsburger@vitacls.org

3) We are accepting submissions. Email article ideas to either the address above or to anethercott@handstfhn.ca

4) We welcome feedback on any of the articles that appear here.

• Link to back issues of Service, Support and Success on the Vita Living Services website, here. Each issue is now available in both English and French. 

Life as Jamie Knows It: new from Michael Bérubé

A new book from Michael Bérubé is cause for celebration, and this one, released just a week ago at the beginning of Down Syndrome Awareness Month is very welcome:

Life as Jamie Knows It - An Exceptional Child Grows Up
Michael Bérubé, Beacon Press, October 2016

The story of Jamie Bérubé’s journey to adulthood and a meditation on disability in American life

Published in 1996, Life as We Know It introduced Jamie Bérubé to the world as a sweet, bright, gregarious little boy who loves the Beatles, pizza, and making lists. When he is asked in his preschool class what he would like to be when he grows up, he responds with one word: big. At four, he is like many kids his age, but his Down syndrome prevents most people from seeing him as anything but disabled. 

Twenty years later, Jamie is no longer little, though he still jams to the Beatles, eats pizza, and makes endless lists of everything—from the sixty-seven counties of Pennsylvania (in alphabetical order, from memory) to the various opponents of the wrestler known as the Undertaker ...

This excerpt  published in Raw Story will whet your appetite for the whole, and might address a significant question for your own family:

How a committed agnostic learned to embrace ‘spirituality’ to explain life and death to his exceptional intellectually disabled child

Michael Bérubé, Raw Story, 9 October 2016

... To that point in his life, Jamie had never experienced the death of a family member. Then, too, there is the fact that I do not often speak or think of our “spiritual” development ... But this was a form of “spiritual” development I recognized, and I immediately regretted not being more aware of Jamie’s possible needs in this respect ...

Life as Jamie Knows It - An Exceptional Child Grows Up is available in print, on Kindle, and as an audio book.

• Links to other books and articles by Michael Bérubé can be found in several posts here and here

World Mental Health Day: 10 October

Today, 10 October, is World Mental Health Day. NSW Council on Intellectual Disability on Facebook published a timely reminder of it's print resources on 5 October 2016:

Worried. Sad. Angry. Scared. Upset. 

We all have these feelings sometimes. If these feelings last 2 weeks or more or keep coming back it maybe a mental health issue. 

NSW CID has Mental Health Fact Sheets - good info and and great conversation starters around what can be a sensitive topic. 

Ask CID can also help with information and referral to Mental Health services 

Ph 1800 424 065 

Mental Health Day is near, so maybe it's time to check in on your Mental Health or the health of someone you know.

• NSW CID Health Fact Sheets can be downloaded here 

Down Syndrome NSW resources on mental health in people with Down syndrome

• Dennis McGuire’s Mental Wellness seminar now available online
• Mental Wellness in Adults with Down Syndrome, Dennis McGuire and Brian Chicoine, Woodbine House (DS NSW library collection)
• Down Syndrome: When to Worry about Mental Health and What to Do About It! A Guide for Parents and Care-Givers, Robin Friendlander and Peter Johnson (DS NSW library collection)

NSW Mental Health Commission: October is Mental Health Month

Mental Health Month NSW is part of a national mental health promotion campaign held throughout October each year. The timing of the campaign centres on World Mental Health Day, which is marked each year on October 10. 

For further information visit the Mental Health Association NSW website.