Down Syndrome NSW and Bus Stop Films - a little history

A little bit of Down Syndrome NSW history featured in a Sydney Morning Herald article yesterday,  in the Meet the Boss series. Bus Stop Films has grown into a strong, highly respected multi-award winning initiative under Genevieve Clay-Smith's leadership, providing arts, learning and employment opportunities for many adults with Down syndrome. We've written about  the involvement of people with Down syndrome in Bus Stop activities and achievement many times in our posts. 

We're pleased to have had a role in its development:

... answering an ad in the university newspaper set the then 19-year-old onto a far more intriguing path; one which, in 2015, led her to being awarded NSW Young Australian of the Year. 

"Down Syndrome NSW wanted a filmmaker to make a documentary. I spent two years with the six families in the film, and it changed my life," Clay-Smith says. 

When the project was finished one of the participants, a young man with Down syndrome, said that he wanted to be an actor. 

Clay-Smith got to work ...   

Meet the boss: Filmmaker Genevieve Clay-Smith

Sue White, Sydney Morning Herald 

30 January 2017 

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

Resources on hearing

This is Hearing Awareness Week in Australia. 

Conductive hearing loss is common in children with Down syndrome (and other forms of hearing loss can also occur), and most families are well informed about its management and importance (in the development of speech, for example). All newborn babies in Australia are now screened for hearing loss.

Hearing Loss in Children with Down Syndrome is a comprehensive fact sheet published by the Sydney Children's Hospitals Network, available online and to download as a .pdf file.

You will also find useful resources for providing information to other people in your child's life on the Hearing Awareness Week website, under the 'resources' tab, including a brochure about conductive hearing loss.

Book now for 'Down syndrome – Quality Living for Individuals and Families - A Lifespan Approach'

IASSIDD (International Association for the Scientific Study of Intellectual and Developmental Disabilities) is the first and only world-wide group dedicated to the scientific study of intellectual disability.

Following the IASSIDD congress in Melbourne, we have been able to secure from Canada the expertise of Dr Roy Brown, a clinical and educational psychologist and Professor Emeritus at the University of Calgary, and his colleague Dr Nancy Jokinen Assoc Professor at the School of Social work, University of Northern British Columbia. Both are established authors, presenters and have over 20 years of experience in quality living issues in people with Down syndrome.

Down syndrome – Quality Living for Individuals and Families 
- A Lifespan Approach

Presenters: Dr Roy Brown and Dr Nancy Jokinen

9:00am – 4:00pm Tuesday 23rd August, 2016

SMC Conference and Function Centre, 66 Goulburn St, SYDNEY

Cost: $155 members, $175 non members

Register now 

Topics include ...

• Individual quality living Principles, Concepts & Application 
• Family Quality Living – Issues for families 
• Summary of recent research – recommendations for practice 
• Opportunities for small group discussion surrounding 
• Early childhood 
• School aged issues 
• Young adulthood – further education, employment 
• Ageing and Dementia 

Further information and online registration

Swallowing difficulties: awareness and information

Yesterday (11 May) was the first Swallowing Awareness Day organised by Speech Pathology Australia.

Swallowing difficulties are common for people with intellectual disability, including those with Down syndrome of all ages. Assoc Prof Bronwyn Helmsley from the University of NSW has written about swallowing difficulties for the NSW Council for Intellectual Disability:

• It's a lot to swallow! Swallowing Difficulties
• Swallowing - 5 Facts for People with Intellectual Disability
• Swallowing Difficulty and People with Intellectual Disability

You can also listen to the articles from the link on the page.

Speech pathologists are one of the main health professionals working with people who have swallowing difficulties.

Swallowing difficulties are also called “dysphagia” (pronounced dis-fay-gia) as this means ‘disorder of swallowing’.

You can find out more about the awareness day here

News from Down Syndrome Education International (2)

In addition to the releases and price reductions outlined in yesterday's post,  Down Syndrome Education International has conducted world leading research and produced highly regarded resources to support the development of people with Down syndrome of all ages for decades. They have recently released some of their popular films to rent or buy online on-demand via Vimeo. Links to trailers and information on access to each of the titles below:

• Speech and Language Activities for Preschool Children with Down Syndrome (2007)

• Activities for Babies with Down Syndrome 

• Educating Children with Down Syndrome at Primary School

News from Down Syndrome Education International (1)

Down Syndrome Education International has recently released lower prices for some See and Learn apps for iPad,  and free online introductions (video and print) for some of its popular, research based programs designed specifically to meet the learning needs of children with Down syndrome:

Find out more about Reading and Language Intervention in a free on-demand online presentation

In this presentation, Professor Sue Buckley introduces the Reading and Language Intervention for Children with Down Syndrome (RLI). RLI is an evidence-based program designed to teach reading and language skills to children with Down syndrome. The intervention incorporates best practice in structured activities delivered in fast-paced daily teaching sessions. It was evaluated in a randomized controlled trial and found to improve rates of progress compared to ordinary teaching.

Save up to 30% with new lower prices for See and Learn apps
Down Syndrome education International (DSE) has introduced new, lower prices for all our See and Learn iPad apps and app bundles – offering savings of between 20% and 30%.

Free online presentation: Introducing See and Learn Numbers

See and Learn Numbers is designed to teach young children to count, to link numbers to quantity, to understand important concepts about the number system and to calculate with numbers up to 10. It also teaches early mathematical concepts important for understanding space, time and measurement - including color, size, shape, ordering, sorting and patterns.

In this presentation, Professor Sue Buckley discusses what is understood about how children learn about numbers and number concepts and how Down Syndrome Education International's See and Learn Numbers program is designed to support number learning for children with Down syndrome.

• View presentation
• Download handouts
• Find out more about See and Learn Numbers

Free online presentation: Introducing See and Learn Language and Reading 
See and Learn Language and Reading is a structured teaching programme that is designed to teach children with Down syndrome to talk and to read. In this presentation, Professor Sue Buckley reviews what is understood about language development for children with Down syndrome and how this informs the design of See and Learn Language and Reading.

• View presentation
• Download handout

Free online presentation: Introducing See and Learn Speech
DSE’s See and Learn Speech program is designed to help parents and educators support children with Down syndrome to develop clearer speech. In this presentation, Professor Sue Buckley reviews what is understood about the speech and language difficulties experienced by children with Down syndrome, what research suggests may be effective ways to promote improved speech clarity and how this evidence has informed the design of See and Learn Speech.

• View presentation online
• Download handouts
• Find out more about See and Learn Speech

Follow news from Down Syndrome Education International via Facebook

Revised growth charts available to download, print

Updated growth charts (height, weight, head circumference and weight/length) for people with Down syndrome from birth to 20 years of age are now available to download. The charts are based on data collected in a US research study published by the journal Pediatrics inAugust 2015.

These charts can help healthcare providers monitor growth among children with Down syndrome and assess how well a child with Down syndrome is growing when compared to peers with Down syndrome.

The .pdf format released by the US Centres for Disease Control and Prevention is easier to download and print than sourcing them directly from the research paper.

Prof Sue Buckley on learning resources

Prof Sue Buckley was one of the keynote speakers from Down Syndrome Education International (DSE) at the Australian Down Syndrome Conference in Adelaide in August. Since the 1970s, UK-based DSE (previously known as the Sarah Duffen Centre), has been at the leading edge of the study of learning in children with Down syndrome, with an international reputation for the quality of its research and practice with both families and professionals. 

In this blog post, published yesterday in the UK, Sue explains how their latest resources build on previous and recent work, using the latest technology, and how both families and professionals can use them most effectively:

Why we are developing the See and Learn programs

Prof Sue Buckley, See and Learn (blogs), 9th September 2015

As we continue to release new See and Learn teaching programs as apps and kits – most recently with the release of the first step in See and Learn Numbers, I wanted to share some of the reasons why we are developing these resources and what we hope they will offer children with Down syndrome.

For many years, we have drawn on a growing body of research investigating the learning difficulties experienced by children with Down syndrome to inform better education. We published a book and a video based on some of our earliest research in 1986. Ever since then, we have worked to bring evidence-based advice to parents and to teachers through our services, publications and our training ...

To brighten your morning ...

Here's a happy little video to brighten the morning - New Idea magazine reports that baby Gammy (in Thailand) is walking. He certainly looks like a happy, healthy little boy.

• Earlier posts about Gamy's progress.

Two recent studies related to this week's focus on books, reading, and language development ...

Science Proves Reading To Kids Really Does Change Their Brains
Catherine Pearson, The Huffington Post, 6th August 2015
Pediatricians often recommend parents routinely read aloud to their young children. Now, for the first time, researchers have hard evidence that doing so activates the parts of preschoolers' brains that help with mental imagery and understanding narrative -- both of which are key for the development of language and literacy ...

After learning new words, brain sees them as pictures

Georgetown University Medical Centre, 24th March 2015
When we look at a known word, our brain sees it like a picture, not a group of letters needing to be processed. That’s the finding from a Georgetown University Medical Center (GUMC) study published in the Journal of Neuroscience, which shows the brain learns words quickly by tuning neurons to respond to a complete word, not parts of it.

Neurons respond differently to real words, such as turf, than to nonsense words, such as turt, showing that a small area of the brain is “holistically tuned” to recognize complete words ...

Australian. Down Syndrome Conference: Adelaide, August

Adelaide based Foundation 21 is hosting The Australian Down Syndrome Conference: Educate Communicate Achieve in Adelaide in August Prof Sue Buckley from Down Syndrome International in the UK, Dr Kelly Burgoyne and Rebecca Baxter will deliver presentations on teamwork and collaboration between families and professionals in improving the educational outcomes of students with Down syndrome. The conference will have three streams that are related to student age from preschool to adolescence.   This conference is a rare opportunity for parents and education professionals to hear firsthand the latest advances in learning for people with Down syndrome, from some of the worlds leading researchers and practitioners. Registrations are open now.  14 - 15 August 2015 Adelaide (Note that this conference will take place immediately prior to the 12th World Down Syndrome Congress in India.) Visit the conference website for program and other details, and for registration.

CHILD magazine, May 2015

Today is all about dance!

No matter how old your own children are, you can pick up a copy of the free magazine Child, May 2015 - the ‘Health, Wellbeing and D3 (diversity, difference and diagnosis)’ issue - for a closer look at the beautiful cover, and the feature article on dancers with disabilities. 

Look for your local edition at your local toy shop, library, cafe, pharmacy, medical centre, preschool or school. To find your local stockist please get in touch with the publisher via email or call (02) 8876 4800:

Cover image: Karen Miles. Used with permission.

And on the Child magazine blog, there is a video from the photo shoot, more photos of Bella and Cate, and an interview with Bella!

Not just for college ...

We spend much longer being adults than being children, and we see more and more attention in the Down syndrome/intellectual disability 'community' focussing on good adult lives for people with intellectual disability.

While we all know that preparing for life after school, for adulthood is not something that happens a few months before a specific birthday, the paper from Western Carolina University featured in Kelley Hampton's most recent post about preparing for college applies more broadly than its immediate intention and can be a useful reminder for all of us:

Preparing Your Son Or Daughter for College: Suggestions for Parents of Children with Intellectual Disability, David Westling and Kelly Kelley

... (Parents) often ask us, “What can we do to increase the chance our child will be admitted?”

Unfortunately, when they ask the question, it is often too late for them to do the kinds of things that will ready their child for college. The kinds of attitudes and activities that are most important should begin early in life and continue until the young man or woman is ready to enter college. So through this paper, we are reaching out to parents to tell them what we think will best prepare their child for college. We hope you will find these suggestions useful ...

(in Preparing your son or daughter for college, 

Kelle Hampton, Enjoying the Small Things, 22nd April 2015)

Dance development opportunity for adults with disability

Image: Pixabay.com

This new project at Carriageworks, announced yesterday, could be a fantastic opportunity for already skilled dancers with Down syndrome who aspire to develop their theatre skills and perform at this prestigious venue:

Announcing a major commission by Carriageworks in partnership with Dance Integrated Australia and Force Majeure – A New Project. 

Dance Integrated Australia’s Philip Channells will collaborate with Force Majeure’s new Artistic Director Danielle Micich and a company of artists with disability who will develop the work over a two year period. The work will culminate in a world premiere season at Carriageworks in October 2016.

Call Out for Performers
Dance Integrated Australia and Force Majeure invite artists with physical, sensory, psychosocial, neurological, medical or intellectual impairment to participate in a weekend workshop audition. 

Applicants must be based in NSW and be 18+ years.

When 9-10 May 2015, 10am-4pm.You will be required to attend one of these days. 

Where Carriageworks, 245 Wilson St, Eveleigh Sydney NSW 2015 T: (02) 8571 9099

• For further information on the criteria and application process, click here. 

Resources

Down Syndrome Education International's series of posts on education research, leading up to World Down Syndrome Day (21st March) has reached #16 this week, and it is an important, wide ranging one on the multiple impacts of commonly occurring sleep disorders on children with Down syndrome:

#16 Sleep problems are common and impact learning, development, health and family life Sleep is important for development and learning, behaviour and general health. Research suggests that sleep problems are common among young people with Down syndrome and are likely linked to cognitive difficulties and behaviour problems. Further research is needed to evaluate treatments and potential therapies ... see more here

Down Syndrome Education International has also held its first webinar for the year (see more here about future dates), and the slides and video from the presentation are now available online, here

Book Reading Checklist for Parents - Hanen Centre
This checklist is a useful quick reference for use at home.  It has two parts, How You Share Books, and How Your Child Participates in Book Reading, and prompts follow up on where to go next with your child's literacy activities at home.

The Hanen Centre supports parents and professionals to help young children develop the best possible early language and literacy skills. For more tips on making the most of book reading to build your child’s early literacy skills, go to www.hanen.org/literacy-at-home

21 examples ... #12

Down Syndrome Education International has just posted its twelfth 'example of how educational research helps and why it matters ...' in the series of 21 planned to take us up to World Down Syndrome Day on 21st March 2105.  

Check them out weekly, and pass them on to those in your circle who will benefit from concise, targeted evidence about particular aspects of your child's development. Each link takes you to a single page of information.

Sign up for emails, follow #education21 on Twitter, Facebook and Google+ or check back each week to find out more.

Reminder about two surveys

Free Stepping Stones Triple P programs for Parents and training for professionals

Stepping Stones Triple P (SSTP) is a new initiative to support families of children with developmental disabilities. Research has shown the programs help to reduce children’s behavioural and emotional problems, decrease parent stress, and increase parent confidence. 

The Project's My Say surveys, one for parents, and one for professionals, are still open for completion, and registration for the participation:

DSA Surveys - The NDIS and people with Down syndrome

It's not too late to complete one of these surveys, and your information will help DSA and state Down syndrome associations to best support people with Down syndrome and their families as we move into the NDIS. Please take a few minutes to complete an online survey now. Thank you.

Many members of state and territory Down syndrome associations have questions and concerns about the National Disability Insurance Scheme (NDIS) and how it works for people with Down syndrome of all ages. 

To be the best voice we can for the Australian Down syndrome community, we'd like to hear from you about your experiences with the NDIS, or (NDIS/NDIS My Way in WA) so far, and any thoughts, questions and concerns you may have. Your answers will also help DSA and the state and territory associations develop resources and tailor supports to help you, so please provide as much information as you can. 

There are two surveys to choose from: 

1. For people not yet in NDIS 

2. For people already in an NDIS or My Way trial site 

You don't have to be a member of your local association to take part.

'Low functioning' and 'high functioning' - often used but what does it tell us?

Do you find the terminology 'low functioning' or 'high functioning' acceptable, or even useful when it is applied to your child? What do parents and teachers mean when we/they use it?

This post was not written about students with Down syndrome, nevertheless Mary Louise Betram's thoughts on the limitations of such terminology will resonate with many parents and teachers - she leaves us in no doubt that it is not useful. It's quite long and detailed, but well worth reading by both parents and teachers, to the very last paragraphs.

Low Functioning? High Functioning? What Are We Really Saying?

Mary Louise Betram, Guest post at Teaching Learners with Multiple Special Needs, 28th November 2014

... "Low functioning" tells me nothing and gives me no clues EXCEPT to tell me about the adults who work with the child ... Kids who are called "high functioning" are the ones who are the easier ones to problem solve. "High functioning" has nothing to do with them, it's all about us and how we see them and their needs.

#education21 - how educational research is helping children with Down syndrome today

Over the 21 weeks to World Down Syndrome Day 2015, Down Syndrome Education International is highlighting 21 examples of how educational research helps and why it matters. The series is now in its fourth week, and will continue until 21st March 2015:

Educational research improves the lives of people with Down syndrome. It provides the foundation for effective support, therapy and teaching for children around the world. Follow #education21 and join a conversation about the future of educational research for people with Down syndrome. 

Sign up for emails, and follow the series on Twitter, Facebook or Google+ to join the conversation. 

21 examples of how educational research helps and why it matters... 

#1. Signing improves early vocabulary learning and communication#2. Verbal short term memory presents specific difficulties#3. Reading can be a strength and support learning and language#4. Learning to talk is a particular challenge