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

Book review: David M. Perry on 'The Secret Life of Stories'

David M. Perry is a disability rights journalist and associate professor of history at Dominican University. Michael Bérubé is a professor of literature at Pennsylvania State University, where he teaches American literature, disability studies, and cultural studies. Both are fathers of sons with Down syndrome.

Narrative Deployments of Disability
Los Angeles Review of Books, 6 April 2016

... Bérubé has organized his work into three main chapters: motive, time, and self-awareness. The first chapter examines (borrowing theorist Ato Quayson’s term) the ways intellectual disability serves as the “ethical core” of narratives, starting with Harry Potter. The great saga of the wizard world is not about intellectual disability, but all the action, Bérubé argues, ultimately stems from Albus Dumbledore’s reactions to his sister’s disability and disability-related death. Here, then, lies a perfect example of Bérubé’s argument that disability infuses literary production in ways that a reader, indeed, an author, might miss. Intellectual disability functions as motive, even if none of the main characters are disabled ...

• Another review of The Secret Life of Stories

Grappling with Intellectual Disability - Michael Bérubé’s The Secret Life of Stories, Manuel Betancourt,  Slant Magazine, 9 February 2016

• Previous posts referencing Michael Bérubé's work are here and here

• Humans, Superheroes, Mutants, and People with Disabilities, Michael Bérubé, TEDx PSU 2010 (Video 13m 16s)

'The Secret Life of Stories': a new book from Michael Bérubé

Michael Bérubé's Life as We Know It: A Father, A Family, and an Exceptional Child, published in 1996 remains a highlight in the literature about people with Down syndrome and their families - a landmark in a then burgeoning list of family accounts. So his latest book, due for publication tomorrow in the US, is much anticipated. If you are a reader, this is one for your 2016 reading list.

The Secret Life of Stories: From Don Quixote to Harry Potter, How Understanding Intellectual Disability Transforms the Way we Read, Michael Bérubé, New York University Press, 2016

Narrative informs everything we think, do, plan, remember, and imagine. We tell stories and we listen to stories, gauging their “well-formedness” within a couple of years of learning to walk and talk. Some argue that the capacity to understand narrative is innate to our species; others claim that while that might be so, the invention of writing then re-wired our brains.

In The Secret Life of Stories, Michael Bérubé tells a dramatically different tale, in a compelling account of how an understanding of intellectual disability can transform our understanding of narrative. Instead of focusing on characters with disabilities, he shows how ideas about intellectual disability inform an astonishingly wide array of narrative strategies, providing a new and startling way of thinking through questions of time, self-reflexivity, and motive in the experience of reading. Interweaving his own stories with readings of such texts as Faulkner’s The Sound and the Fury, Haddon’s The Curious Incident of the Dog in the Night-Time, Kingston’s The Woman Warrior, and Philip K. Dick’s Martian Time-Slip, Bérubé puts his theory into practice, stretching the purview of the study of literature and the role of disability studies within it. Armed only with the tools of close reading, Bérubé demonstrates the immensely generative possibilities in the ways disability is deployed within fiction, finding in them powerful meditations on what it means to be a social being, a sentient creature with an awareness of mortality and causality — and sentience itself. Persuasive and witty, Michael Bérubé engages Harry Potter fans and scholars of literature alike. For all readers, The Secret Life of Stories will fundamentally change the way we think about the way we read. (Publisher's note)

The Secret Life of Stories is widely listed by booksellers online, and is available in both print and Kindle editions.

Life As We Know It is available for Down Syndrome NSW members to borrow from our library, as is  Great Expectations (2008) to which Bérubé contributed three stories about his son, Jamie, who has Down syndrome, and the assumptions, expectations and realities of his academic abilities and thought processes.

Down Syndrome NSW members can contact Jo in the library via email library@dsansw.org.au to arrange a loan.

Resources

Library Shelf
Two new titles that will be useful for families with children starting at new schools this year:

Explaining Down Syndrome

Angela Royston, Franklin Watts Publishers
This book is one in the series of 'Explaining ...' books, published in the UK. This is the 2013 edition of the title originally published in 2009. It addresses all the life stages in an easliy accessible format. Written for an upper primary (and older) audience, the book contains contemporary colour photos.

Can I Tell You About Down Syndrome? A guide for friends, family and professionals

Elizabeth Elliott, illustrated by Manjit Thapp, Jessica Kingsley publishers
Told as a first person narrative, from the point of view of David, who describes what it is like to have Down syndrome along with some concise explanations.

This book is suitable for a primary school aged (and above) audience, as well as parents, friends and classroom teachers.

Elizabeth Elliott is a child and adolescent psychiatrist and Chair at Downs Syndrome Research Foundation in the UK

Down Syndrome NSW members can contact Jo in the library via email library@dsansw.org.au to arrange a loan.

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

A review of The Parents' Guide to Down Syndrome, by the parent of a young child

... A section of self-advocacy? Yes please! And "The combination of genetics, environment, science, and love that makes every person unique is not erased or diminished by Down syndrome." Finally. Your kid is your kid is your kid ...

• Previous post on this book

Library Shelf : new books

Getting from Me to We: How to help young children fit in and make friends 
Shona Tuck, Woodbine House

This book outlines foundational skills necessary for children to form connections and friendships with others. It explains how parents can teach their children social observing skills at an early stage in their development and identify: Where their child is on the social skills ladder. How to set goals to fill in those gaps. How and when to support their child during play. How to identify play behaviours that hinder or help. How to model good social skills and cues. Written by a speech-language pathologist and researcher with expertise in socially at risk kids, the book includes profiles of children who illustrate a wide variety of characteristics and behaviours that lead to social isolation, along with effective, well-designed activities that encourage joint attention, eye contact, and social interaction. Beyond its appeal to parents, this book will also garner interest from counsellors and teachers as well.

Intellectual Disability and Dementia: Research into practice 
Karen Watchman (Ed), Jessica Kingsley publishers

Presenting the most up-to-date information available about dementia and intellectual disabilities, this book brings together the latest international research and evidence-based practice, and describes clearly the relevance and implications for support and services. 

Internationally renowned experts from the UK, Ireland, the USA, Canada, Australia and the Netherlands discuss good practice and the way forward in relation to assessment, diagnosis, interventions, staff knowledge and training, care pathways, service design, measuring outcomes and the experiences of individuals, families and carers. The wealth of information offered will inform support and services throughout the whole course of dementia, from diagnosis to end of life. Particular emphasis is placed on how intellectual disability and dementia services can work collaboratively to offer more effective, joined up support.

Down Syndrome NSW members can contact Jo in the library via email library@dsansw.org.au to arrange a loan.

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

Books and other resources

Library Shelf: New Title

Raising Henry: A memoir of motherhood, disability and discovery

Rachel Adams’s life had always gone according to plan. She had an adoring husband, a beautiful two-year-old son, a sunny Manhattan apartment, and a position as a tenured professor at Columbia University. Everything changed with the birth of her second child, Henry. Just minutes after he was born, doctors told her that Henry had Down syndrome, and she knew that her life would never be the same. In this honest, self-critical, and surprisingly funny book, Adams chronicles the first three years of Henry’s life and her own transformative experience of unexpectedly becoming the mother of a disabled child. A highly personal story of one family’s encounter with disability, Raising Henry is also an insightful exploration of today’s knotty terrain of social prejudice, disability policy, genetics, prenatal testing, medical training, and inclusive education. Adams untangles the contradictions of living in a society that is more enlightened and supportive of people with disabilities than ever before, yet is racing to perfect prenatal tests to prevent children like Henry from being born. Her book is gripping, beautifully written, and nearly impossible to put down. Once read, her family’s story is impossible to forget. Publishers Note, Yale University Press

Contact Jo in the library via email library@dsansw.org.au

6 Books About Anxiety For Families With Special Needs

Karen Wang, Friendship Circle, 28th October 2015
Child anxiety is a widely misunderstood condition, especially when the child also has developmental delays. Anxiety doesn’t always look like anxiety. Sometimes it appears as ...

Vision
Down's Syndrome Association (UK), 2nd November 2015
This November, we’re going to be publishing a series of blogs and articles on vision. There will be information on a wide range of issues, resources for all ages and links to helpful downloads and websites.

People with Down’s syndrome are more likely to have problems with their eyesight ...

Books and other resources

Library Shelf: Boyfriends and Girlfriends, Terri Couwenhoven
Everyone knows that dipping your toe in the dating pond can be a little intimidating without first seeking some expert advice! And that's exactly what Terri Couwenhoven delivers in her new book written expressly for teens and adults with intellectual or developmental disabilities. Boyfriends and Girlfriends explains the dos and don'ts of dating and validates their normal, age-appropriate desire for companionship and romance.

The book covers the biggest questions and smallest concerns of every would-be dater, including:

Who is an appropriate dating partner and who is not
How to read signals and judge whether the interest is mutual
How to ask someone out on a date
How to turn down a date
How to handle rejection
What sexual feelings are
How to work through problems in a relationship
What to do when a relationship is not working  ... (publisher's note)

DS NSW members can contact Jo in the library via email library@dsansw.org.au to arrange a loan.

The Prince Who Was Just Himself: A Review
Ellen Stumbo, 15th September 2015
... As for my personal thoughts on the book, the illustrations are terrific, but it felt like a fairytale about the author’s family, and I had a hard time connecting to the narrative ...

... Still, I’m glad I have this book in my collection of disability related books. The book does show that everyone has something to offer, and an act of compassion can be what another person needs most in their life. Three out of five stars ...

Resources from the Down Syndome Diagnosis Network 1st Annual Rockin’ Mom RetreatJennifer Bekins, Talk - Down Syndrome, 22nd September 2015
I do not have a child of my own with Down syndrome, three of my 5 siblings do. My husband Peter and I have two sons and our oldest was diagnosed 5 years ago with Tourette syndrome. I’ve also had the honor of listening to hundreds of diagnosis stories from the many families I’ve met while practicing as a speech-language pathologist (SLP). My morning session blended my experience as a sibling, mother, and professional as I shared the very personal ways I grew and changed because of my son’s diagnosis.

The following links are resources/voices/supports I’ve either benefited from myself, used in my professional practice, or generally found useful ...

Sex education: rights and resources

To paraphrase the very knwledgeable and to-the-point Dave Hingsburger:

'... you can deny your son or daughter an education about sex and sexuality, but they will learn about it anyway - you just won't know what they have learned and how safe it is ...'

This Is What Sex Ed for the Intellectually Disabled Looks Like
Monica Heisey, Broadly, 30th September 2015
A lack of sexual education has an impact in all aspects of a person's life, so why are intellectually disabled people given so few opportunities to learn about sex on their own terms? ...

The Down Syndrome NSW library collection includes several items about sexuality education. You might like to start with this classic, which pretty much sets the benchmark:

Teaching children with Down syndrome about their bodies, boundaries, and sexuality: a guide for parents and professionals by Terri Couwenhoven

Members can contact Jo in the library via email library@dsansw.org.au to arrange a loan. The Down Syndrome NSW library catalogue is available to view here.

Library Shelf: new title

Active Support: Enabling and empowering people with intellectual disabilitiesby Jim Mansell and Julie Beadle-Brown

Active Support is a proven model of care that enables and empowers people with intellectual disabilities to participate in all aspects of their lives. The authors provide a comprehensive overview of Active Support and how it can be used in practice, based on the theory and research underpinning the methods involved. They describe how to engage people with intellectual disabilities in meaningful activity as active participants, and look at the communication style needed to foster positive relationships between carers and the people they are supporting. Highlighting the main issues for those trying to put Active Support into practice, they explain what is needed on a day-to-day basis to support the implementation, improvement and maintenance of the approach, along with possible solutions for the difficulties they may encounter. Finally, they look at how to integrate Active Support with other person-centred approaches, drawing on examples from various organisations and individual case studies. (Publisher's note)

Down Syndrome NSW members can contact Jo in the library via email library@dsansw.org.au to arrange a loan. The Down Syndrome NSW library catalogue is available to view here.  

Chris Burke retiring from NDSS

Do you remember Chris Burke from his starring role in the 1990s TV series, Life Goes On? Following TV, Chris has had a long career as an advocate with the National Down Syndrome Society (NDSS), based in New York. Chris has decided that it is time to retire, and the NDSS has paid tribute to his work here:

... NDSS Board Chairman Rob Taishoff said, “Chris has been an inspiration to generations of people across the country with disabilities. Throughout his lifetime, Chris has given hope to millions of families who may not have known what to expect when given a diagnosis that their child has Down syndrome. Seeing what he has accomplished makes every parent realize that their child will be able to achieve great things” ...

Chris's advocacy and support for families was international, both through his work as an actor and entertainer, and his speaking and presentation roles at many meetings and conferences around the world. We thank him for his work, and the dedication and fun he brought to it, and wish him an enjoyable retirement.

The first series of Life Goes On is available on DVD for members to borrow from the Down Syndrome NSW library, as is Chris Burke's autobiography, A Special Kind of Hero,  co-written with Jo-Beth Daniel - contact Jo, at library@dsansw.org.au to arrange a loan.

Resources, publications

Library Shelf: new title
Practical dementia care for adults with Down syndrome or with other intellectual disabilities, by Vee Prasher (2014, Nova Science Publishers) is now available for loan to members.

Extract from the publisher's description:
Dementia in adults with Down syndrome or with intellectual disabilities is a rapidly growing field of health and social care. There is, however, limited information available for families and health care providers on how best to manage associated behaviours and difficulties. ... The book primarily emphasises how best to cope with the clinical problems of dementia but does include information on epidemiology, on the common types of dementia and on the historical perspective of dementia in Down syndrome and intellectual disabilities. It discusses the wide range of physical, psychological, social and legal issues of the different levels of dementia from the time of diagnosis to the end of life. The book includes chapters on aggression, epilepsy, drug treatments and end of life issues.

This book is aimed principally at family members and carers, but is also recommended for professionals, including physicians, psychologists, nurses, health related therapists, working in the field of aging and intellectual disabilities ...

Contact Jo in the library via email library@dsansw.org.au to arrange a loan.

Photographer Rachel Callander's wonderful gift to families of children with a disability

Rachel Browne, Sydney Morning Herald, 27th July 2015

... "Sam and I really wanted to balance the negative language around disability," Mrs Callander said. "The images really challenge that perception that disability is something negative. They celebrate ability, they celebrate the child's character and their personality."
... The 75 children featured in the book all have genetic or chromosomal conditions such as Down syndrome, Angelman syndrome and Prader-Willi syndrome.

Resources

New library title:

Can I tell you about Dyspraxia?A guide for friends, family and professionals
Maureen Boon
Told as a first person narrative account of Marco, a school-boy with Dyspraxia. The short book gives useful insights into what it feels like to have the condition.

Members' libraryThe Down Syndrome NSW library catalogue is available to view here.  

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

Down Syndrome Research Foundation App Store
A list of DSRF's most highly recommended apps for individuals with Down syndrome; a portion of all proceeds of sales generated through these links will support DSRF. DSRF is located in Vancouver, Canada.

5 Ways to Teach an Older Child with Special Needs about Hygiene

Becca Eisenberg, Friendship Circle, 3rd February 2015
Many older children, teenagers, and young adults are challenged with how to maintain good hygiene and have a decreased awareness. These individuals often rely on the adults in their life to help remind and guide them to wash hands, shower every day, shampoo hair, etc ... Here are five ways to increase awareness and help teach improved hygiene skills with older children, teenagers and young adults with special needs.
Dual Diagnosis ASC / DS

The Down's Syndrome Association in London has established a new blog for families with a member with dual diagnosis Autism Spectrum Condition/Down’s syndrome (ASC/DS)
There will be a new blog piece every month.

Library Thursday: new book review, extract from a well loved book

A Dad's Love: Professor Writes About Son With Down Syndrome

Gary White, The Ledger, 10th January 2015
... "Prior to having Jason, I worshipped at the altar of brains," McGuire said. "I judged people by how smart they were, how quick they were, how clever, and when my son wasn't going to be any of that, that was a hard blow and I had to, in effect, relearn love and love people for who they really are and not for their brains. Jason certainly has taught me that." ...

Gifts 2: How People With Down Syndrome Enrich the World, (Kathryn Lynard Soper, ed, 2009) is a popular book, especially with younger families, available for loan to members from our library. Ellen Stumbo has posted her essay for the book, Not a Mistake, on her blog.

Members' library

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

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

Library Thursday - books and other resources

Library Shelf

Making Self-employment Work for People with Disabilities
by Cary Griffin, David Hammis, Molly Sullivan
This is an American publication covering the following topics:

• Self-Employment as a Mainstream Approach to Adult Life
• Person-Centered Business Planning: Discovering Personal Genius
• Business Feasibility
• Building the Business Plan
• Marketing and Sales Tactics
• Small Business and Social Security Income Benefits Analysis
• Small Business Finance and Small Business Owners with Disabilities

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

Archiving Project

Our archiving project continues on a weekly basis in the office.
Do you have any old photos from Down Syndrome NSW events that you would like to send to us? 

Send print material to

Down Syndrome NSW, PO Box 107, Northmead 2152
Or digital material to the library via library@dsansw.org.au

Colouring resources 

Following our post about online access to resources for older children and adults who enjoy colouring, readers also recommend:  

A brilliant resource that can be downloaded and coloured in comes from the deviant art blog. There is a wonderful collection and the artists who post are happy for people to download and colour (just not on-sell) and give them credit if posting work on the web. From animals to people, simple to complex. Lovely images like mermaids such as Ariel, ponies, fish and more.

Thanks Aileen.

Dover Books has a large range of colouring books too. Available in some art supply stores and bookshops.

Thanks Jo.

Online publications

Lifetimes
by Brian Melloni and Robert Ingpen, 2011
A video 'book' that could be useful for helping to explain death to children and to people with intellectual disability. Thanks to Down Syndrome Victoria for posting this link on their Facebook page recently.

Congratulations to editors Dave Hingsburger and Angie Nethercott on completing the third year of publication of Service, Support and Success (the Direct Support Newsletter), published monthly in Canada by Vita Community Services. It is made freely available online and by subscription (contact details are in every issue). Each issue addresses a single topic. The last few issues from 2014 are now available online, as are all back issues:

• Volume 3-Issue 8: The Art of Summer
• Volume 3-Issue 9: Something is Different Here: Promoting Awareness of an Invisible Disorder
• Volume 3-Issue 10: No Borderline between Respect and Care: Supporting People with Intellectual Disabilities Who have Borderline Personality Disorder
• Volume 3-Issue 11: Movember and Men’s Health: What You Should Know! 
• Volume 3-Issue 12: Food, Flavours & Finding Connections: Honouring Diversity in the Kitchen

People with Disability Australia E-bulletin
November 2014 issue

Mader You Look!
2014 (8th edition) - magazine of the NSW-wide Don't DIS myABILITY campaign for International Day of People with Disability.

A new blog has been launched by the NSW Council for Intellectual Disability.
The first post (2nd December 2014) is  on whether ADHC should close, with the rollout of the National Disability Insurance Scheme.

Centre for Disability Studies News : No. 13, Vol 2.

Why 'Sam's Top Secret Journal'?

Sean Adelman posted this background information on his 'Sam's Top Secret Journal' series of

books a few days ago on the books' Facbook page.  He has generously given permission for us to repost it here, and is donating copies of the books to our library.  Jo will let us know when they are available for borrowing by members:

Thanks to everyone that has supported Sam. I hope that I am making a difference in my small way. I've been asked a lot about "why" I started the Sam Series.

There are so many reasons, but first and for most would be to create hope and expectations for parents, siblings and society. Dev and Sue went to their first NDSC convention a few years ago and heard Karen Gaffney state:  

“I am not the exception, I am the possibility”.  

I think that is the same reason we wanted to have a literary figure for others to have in mind. 

When you are a new parent you believe everything is possible. Your child will grow up to understand physics like Hawking, sing like Barbara, play in the NFL like Elway, create like Oprah, be a doctor/lawyer/teacher … As the child grows into their own person those hopes and dreams get modified and the parent (hopefully) starts to consider realistic dreams for that child: college, family, a job…happiness… When you get an early diagnosis it seems all of those hopes and dreams are sucked into a vortex of doom. The dreams turn to worries. Our hope is to help keep those dreams alive for parents, kids and society.

If we can help society change its viewpoint from measuring things someone can not do, to valuing ABILITY and appreciating differences each of us brings, than we will be happy. 

The stories in the “Sam” series are fictional, but every thing that Sam does in the books is something our daughter Dev has done in real life. Does that mean every child with Down syndrome will be able to do the things that Sam does, of course not, every child is different. But if you never knew about Anne Frank, Einstein, MLK, Mare Curie the list goes on and on, how limited our dreams would be. The stories written about these larger than life people expand our dreams and hopes for our own lives. Kind of lofty goals, but that is the reason for writing the books.

Sean Adelman, 14th November 2014 

Thank you Sean! 

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

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.

Library Shelf

New Title in the library collection

Educating Children with Down Syndrome: Research, theory and practice with children and adolescents, Rhonda Faragher and Barbara Clarke (eds), Routledge, 2013

While the emphasis is primarily on the school years, links to early intervention and to life post-16 are made, with chapters organized into three parts: conceptual overview of issues in learning and teaching, learning mathematics, and literacy development. 

The book is also united by the cohesive themes of assessment, evidence-based practice, and inclusive practices. 

Educating Learners with Down Syndrome importantly incorporates the voices of individuals with Down syndrome, whose personal narratives add significance to the research mission of the text and demonstrate the authors' inclusive philosophy. 

Aimed at researchers, teacher educators, higher degree students, and policy makers, this book is the first of its kind to provide a compendium of research on educating learners with Down syndrome. (Publisher's note)

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

Archiving Project

Our archiving project continues on a weekly basis in the office.

Do you have any old photos from Down Syndrome NSW events that you would like to send to us? Please do so.

Send print material to:  Down Syndrome NSW, PO Box 107, Northmead 2152
or digital material to the library Email: library@dsansw.org.au

'Now I See' - a good resource for local libraries

Does your local library have Now I See, which was released for World Down Syndrome Day in March this year? You can always ask that your library add particular titles to their collection - putting in a request is an easy and effective way of promoting your community's resources about people with Down syndrome for Down Syndrome Awareness Week, in October. Here's an article about one Melbourne suburban council's commitment to provide copies in all of their libraries:

The upside of Down
Neil Walker, The Bayside News, 19th March 2014
... (Phil Wall's) memory of that day is vividly described in a new book entitled Now I See, compiled by Carolyn McDiarmid and Angela Blakston. Mr Wall’s family story called Surprise, Surprise is one of 50 in the book, written by parents and grandparents of children with Down syndrome ... Kingston City Council has agreed to buy copies to be made available at all Kingston libraries.

Down Syndrome NSW members can borrow a copy of now I See from the library:

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

Library: 4th September 2014

New Title

Targeting Language Delays: IEP Goals & Activities for Students with Developmental Challenges
Caroline Lee

Many school-aged children with developmental and communication challenges need help with their listening, language, and reading skills. Targeting Language Delays explains how to teach these skills in sequential steps using more than 100 goals and activities that can be incorporated into an IEP or used for home practice.

Part 1 offers background and tips on teaching language skills. Part 2 contains goals in key language areas:

• following directions
• negative "no" & "not"
• "yes" & "no"
• nouns
• vocabulary (nouns & verbs)
• classification and categorization
• descriptors (including "same" & "different")
• concepts
• "wh" questions
• listening skills (discrimination, memory & processing)
• word & sentence structure
• whole word reading

Archiving Project
Our archiving project continues on a weekly basis in the office. We would like to have a duplicate set of our calendars for the archive.

Are there any copies of DS NSW Calendars from the following years; 2000, 2003, 2007, 2009, 2010, 2011? Any extra copies hiding in members' homes from these years would be greatly appreciated.

Email: library@dsansw.org.au

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

New resources

What to do when you worry too much 
- a kid's guide to overcoming anxiety
Dawn Huebner, Magination Press, 2005

An interactive self-help book designed to guide 6?12 year olds and their parents through the techniques most often used in the treatment of generalized anxiety. Metaphors and humorous illustrations make difficult concepts easy to understand, while prompts to draw and write help children to master new skills related to reducing anxiety. Engaging, encouraging, and easy to follow, this book educates, motivates, and empowers children to work towards change. Includes a note to parents by psychologist and author Dawn Huebner, Ph.D. (Goodreads)

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

Toothbrushing App: Grinners are Winners
This cute new app is a fun way to encourage tooth brushing. When played on an iPad it also gives the midline a good workout.


See and Learn Saying More Words - App Editions

See and Learn Saying More Words apps are designed to help children with Down syndrome to develop clear speech. They may also be helpful for other children with similar speech difficulties.

See and Learn Saying More Words apps are available or under development for the following platforms:

• Android tablets - now available - download from Google Play
• Apple iPads - now available - download from App Store
• Windows 8.1 tablets and PCs - now available - download from Windows Store
• Windows 7 PCs - expected soon
• Further information about content, activities and versions