Stepping Stones PPP webinar series - register by 7 March 2017

3 free webinars on parenting children 

with Down syndrome aged 2 to 12 

Wednesdays 8, 15, 22 March 2017

12 - 1.30 pm

Australia wide access

See this post for details of content and how to register

Register by 7 March

Free webinar series: Stepping Stones Triple P

Are you a parent / carer of a child with Down syndrome? 

As part of the Stepping Stones Triple P Project, Down Syndrome NSW invites all parents of children with Down syndrome aged 2 to 12 to attend the following FREE parenting webinar series: 

Seminar 1: Positive Parenting for Children With a Disability 

Positive parenting is an effective approach to raising children that emphasises the positive. It involves creating a family environment that is loving, supportive and predictable. This is important in raising healthy, well-adjusted children who will reach their potential and have rewarding relationships with others. Positive parenting reduces the stress of parenting and makes it more enriching and enjoyable.

Wednesday 8th of March 2017, 12pm - 1.30pm

Seminar 2: Helping Your Child Reach Their Potential 

All children need to develop skills to help them become independent, to get on with others and to reach their potential. While children can pick up some skills simply by watching others, children with disabilities often need a more structured approach. This seminar focuses on how to teach children important new skills and behaviours by following six key steps.

Wednesday 15th of March 2017, 12pm - 1.30pm

Seminar 3: Changing Problem Behaviour into Positive Behaviour 

Children with disabilities are more at risk than others of developing problem behaviours. These behaviours can interfere with their growth and development and can be disruptive for the family as a whole. This seminar provides ideas on understanding why a particular behaviour is occurring and practical suggestions for how to promote alternative behaviour.

Wednesday 22nd of March 2017, 12pm - 1.30pm

Seminars will be delivered online, via Webinar so that they can be viewed by parents and carers across Australia.

More information and instructions for how to access the Webinar will be provided once you register for the seminars.

RSVP by 7th March 2017: As these programs are being funded as part of a research project please contact the research team to register your interest:

Phone: 02 9114 4060
Email: fhs.Steppingstones@sydney.edu.au

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

Better Start - Early Days webinars: February, March

Better Start - Early Days has announced a new webinar program for parents who have a young child with a disability:

These webinars complement our national program of workshops for parents who are in the early days of the journey with their child and who are still finding their way in the disability system.

YOU JUST NEED A COMPUTER AND AN INTERNET CONNECTION. IT'S EASIER THAN YOU THINK!

There are four free one-hour webinars:

1. Funding and Finding Your Way – focusing on Better Start and NDIS funding
2. Early Childhood Intervention
3. Parent and Carer Wellbeing
4. Future Planning

Parents can choose the ones that suit them. 

We will run the webinars regularly. Visit our website to see when they are on, or register interest for future webinars or workshops.

Parenting with an intellectual disability: on 'The Project'

From NSW CID on Facebook, 5 January 2016:

All parents need support to raise a child. Support needs vary depending on many things like life experience and how we learn.

Last night Ch10's The Project shared Ashley Odger's story, a Dad with intellectual disability who is challenging the misconception that parents with intellectual disability can't make good parents.

"They thought it was not going to work but I proved them wrong" says Ashley. Meet him and his daughter here:

Parenting with a disability, The Project, 4 January 2016

Ashley Odgers may have a genetic condition leaving him with an intellectual disability, but he's proven to critics that he can also be a wonderful father.

For more information on support for parents with intellectual disability contact Ask CID on 1800 424 065 or email info@nswcid.org.au

• NSW Council on Intellectual Disability is the peak body supporting the interests of people with intellectual disability in NSW

News and opinion from the broader disability community

Local Pathways to Disability-Inclusive Governance in Indonesia

Natalia Warat, Asia Foundation, 16th December 2015

“Nothing About Us Without Us” has become a familiar slogan used by the international disability movement and relies on the principle of full participation for all. However, in Indonesia, where people with disabilities (PWDs) still face enormous barriers, we’re just recently starting to see this slogan being put into practice.

How School Systems Create *That* Parent for Children in Special Education

Laurie Levy, Huffington Post Australia, 16th December 2015

Demanding. Annoying. Angry. Unrealistic. Unreasonable. Every teacher, principal, and school district administrator knows *that* parent. In special education, there are much greater numbers of *that* parent, and I'm sure school systems feel irritated and challenged by the threats of law suits and seemingly endless fights over Individualized Education Plan (IEP) goals. But do they realize their role in creating *that* parent? ...

Featured Philosop-her: Elizabeth Barnes
Meena Krishnamurthy, Philosop-her, 15th May 2015

... I have sat in philosophy seminars where it was asserted that I should be left to die on a desert island if the choice was between saving me and saving an arbitrary non-disabled person. I have been told it would be wrong for me to have my biological children because of my disability. I have been told that, while it isn’t bad for me to exist, it would’ve been better if my mother could’ve had a non-disabled child instead. I’ve even been told that it would’ve been better, had she known, for my mother to have an abortion and try again in hopes of conceiving a non-disabled child. I have been told that it is obvious that my life is less valuable when compared to the lives of arbitrary non-disabled people. And these things weren’t said as the conclusions of careful, extended argument. They were casual assertions. They were the kind of thing you skip over without pause because it’s the uncontroversial part of your talk ...

Government to pay disabled workers 70% of back wages as class action ends

Helen Davidson, The Guardian, 18th December 2015

A long-running legal battle over a disability employment scheme which paid some people as little as $1 an hour has come to an end after the federal government agreed to back pay 70% of the wages owed ...

Better Start Early Days: webinar dates December 2015 - february 2016

A program of webinars (online seminars or workshops) is a new initiative from the Better Start for Children with a Disability program:

... These interactive webinars have been developed to support parents of young children with disability navigate to the disability services environment. 

Participating in these webinars will help you to learn about and share information, tools, strategies and resources to help you in the early years of your child’s life. They will provide information about the Government’s Better Start Initiative and National Disability Insurance Scheme (NDIS) and how these can be used to benefit your child. 

Each webinar is 60 minutes long with materials available for pre-webinar reading and activities. Facilitators and guest speakers can be available for extended “chat” time after the webinar ...

Details on how to register and participate, and dates between 8th December 2015 and 16th February 2016 are now available at the Better Start website, here. Webinars will be repeated in 2016.

This program is funded by the Australian Government Department of Social Services. It is run by the First Step Alliance, which includes some Australia's most respected national disability organisations, including Down Syndrome Australia.

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 ...

New blog: 'The life that Max built'

Alex McAuley's blog The Life That Max Built is a new and very welcome addition to the scene - beautifully written, candid, funny ... she aims to reassure newer families that life will be good, without shirking the bits that will hard, and strikes just the right note. Max is 22, and one of four boys, so Alex and Max have a lot of well-considered experience to share.

(In addition to regular blog posts, the as-yet undeveloped pages 'Dancing to the Max' and 'Pottery to the Max' hold promise of other delights. If you can't wait, you can read a little more about Max here.)

Just three posts in, this one is going on the 'Blogs we read' list (scroll down the column on the right of this page) and into the blog reader so that no post is missed. It deserves to be shared around.

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.

Does she know?

Many parents worry about whether their child will know/knows that they have Down syndrome, what their understanding of it is, and whether and when they should tell them. In our experience, by the time parents decide to address the issue, many children already have some understanding, regardless of their ability to communicate about it.

In most families today, Down syndrome will be part of everyday conversation, openly acknowledged. Some people with Down syndrome are quite comfortable with the term, and in the knowledge that they have Down syndrome.  Others are more ambivalent, and a few are even hostile to the very idea.

Part of the parental concern is the impact of teasing and other forms of bullying that a child might encounter.

A very wise man with Down syndrome who worked for Down Syndrome NSW for some years, until the late 1990s, spoke simply and eloquently about living with Down syndrome, often speaking with groups of students, and happy to answer their questions.

One of the many important things he taught us, in a conversation that he initiated, was that parents do need to tell their children that they have Down syndrome and that it is okay. He wisely pointed out that if we did not tell them, someone else would, inevitably, and that it might not be done kindly, or in a way that we would wish it to be handled. That had happened to him, and he regretted that his mother (who had died many years before) would not have wanted it to be so.

This thoughtful new blog post, written by Kelle Hampton in the lead up to her daughter, Nella's fifth birthday, addresses some of the nuances around Nella knowing about her own differences:

Speaking in tongues: an almost fifth year birthday, Kelle Hampton, Enjoying the Small Things, 8th January 2015
... Emotional procrastination was my savior the year Nella was born. “You don’t have to think about ten years ahead right now — just love her today.” I still tell myself that and yet things are different now. You eventually have to think about things because your child’s future depends on it. (And, if you’re brand new to this, don’t worry—you’ll be ready sooner than you think.) Some of the things I kept myself from thinking about are happening right now ...

Dr Brian Skotko's research on how people with Down syndrome see themselves:

Skotko, B.G., Levine, S.P., Goldstein, R. (2011). Self-perceptions from People with Down Syndrome. American Journal of Medical Genetics, Part A: 155:2360-2369. 

•   Research article
•   Press release summarising the results

Stepping Stones parenting intervention in NSW: August update

A world-first parenting intervention is happening in New South Wales, and you’re invited to be part of it.

From early 2015, every parent and caregiver of a child with a disability in NSW can get free parenting support through the Stepping Stones Triple P (SSTP) Project. Click here to find out more.

Stepping Stones is an evidence-based parenting program which can significantly reduce child behaviour problems and improve parental wellbeing.

To access free help under this project, parents of children with a disability aged 2 to 10 are invited to first complete a survey called My Say and register their interest. Professionals who work in this field are also invited to do the My Say survey and register their interest in free training and resources.

So far, 142 parents and 395 professionals have responded to the survey, but we need to hear from a lot more. We’re using survey responses to help identify regions in high need of parenting support, so don’t let your area miss out! Please do everything you can to let local parents and professionals know about the SSTP Project and the importance of filling in the My Say survey.

You can also like the project’s Facebook page to help spread the word that free parenting support is coming to NSW.

I look forward to bringing you more information about the SSTP Project, and thank you in advance for your support.

Regards,

Professor Stewart Einfeld

Principal Investigator, SSTP Project

FHS Senior Scientist, The Brain and Mind Research Institute

Good health: a family's 'Heart Tale'

Advances in the treatment and management of congenital heart disease have been very important for children with Down syndrome, in whom the incidence of congenital heart disease is around 50% - much higher than in the population as a whole.  This is a well told story about a child with congenital heart disease growing into healthy adolescence, a prenatal diagnosis and the impact of seeing other people with Down syndrome doing the most ordinary of things:

Heart Tale
Amy Dietrich Hernandez, Concave Bed, Concave Life, 14th January 2014
... We sat across the desk from my normally jovial OB and heard the words "heart problems" and "closely associated with Down syndrome" for the first time. He looked a bit grim and was apologetic almost to the point of tears. I was trying to wrap my brain around what Down syndrome had to do with my baby's heart. Of course, I would learn that Down syndrome and heart issues were very closely linked, but until that moment I had lived in a bubble of blissful ignorance ...

Insight, SBS 1, Tuesday, 8.30 pm

While few people with Down syndrome are parents, that could change as attitudes, expectations and services change. Conversations such as this week's SBS TV Insight episode will become more pressing for some people with Down syndrome and their families:

Image: pixabay.com

What's Best For The Child 

This week on Insight, a difficult conversation about how an intellectual disability may affect a parent’s capacity to raise a child.  

We hear from parents and their children about what life is like at home. And we hear from child protection workers about the delicate process of making painstaking assessments and decisions about a parent’s abilities.

Visit the Insight website for more information about the program and to 'meet the guests' for this episode.

Insight SBS One, 8.30 pm, Tuesday 23rd April 2013
 

Low muscle tone and infant feeding - questions and answers

Jennifer Bekins follows up her recent Talk - Down syndrome post Pre-feeding Exercises for Children with DS: A must? with an excellent discussion on low muscle tone and infant feeding: 

Does low-tone mean my infant will have feeding problems?

Since my post on pre-feeding exercises I’ve had some really good questions.

• What do you do for tongue thrust?
• What about drooling?
• How do you address low-tone and feeding? Exercises?

I want to take time and answer all of these, but today I will focus on low-tone, feeding, and children with DS ... read on here, at Talk - Down syndrome


Edited 15/3/2013 to add:
Today Jennifer has reprised and updated an older post on bottle feeding babies with Down syndrome - an excellent companion piece to the post on low tone and infant feeding -  Bottle feeding a baby with Down syndrome.

Results of survey on 'Parents and caregivers' experiences surrounding diagnosis of their child's genetic condition'.

The results from a survey conducted in 2012 by a collaborative international team, including researchers at the University of Newcastle (NSW) are now available in a preliminary, unpublished report, Parents and caregivers' experiences surrounding diagnosis of their child's genetic condition.

We have the researchers' permission to publish the link, with the rider that ... this is unpublished data and cannot be used without the written permission of Dr Linda Campbell. 

Contact details are on the study website.

New online information sessions for parents of very young children with Down syndrome

 Two new online recordings are now available from the excellent Speaker Series offered by Boston Children's Hospital Down Syndrome Program:

November 6, 2012 - Dr. Emily Davidson, Angela Lombardo and Sarah Cullen presented
Your Baby's First Year: What You Should Know!

December 4, 2012 - Dr. Nicole Baumer presented
Infantile Spasms and Seizures in Children with DS

It is highly recommended that parents of babies with Down syndrome have some information about Infantile Spasms - not to worry you, but to alert you to the higher than usual incidence of this still rare but significant condition that can be difficult to diagnose accurately. We hope you never actually need it, of course.

After School - what then? February and March 2013 workshops

This Family Advocacy NSW workshop is about preparation and planning for when a student with disability, who will need ongoing support, leaves school.

It is suitable for families of students who are approaching the end of high school.

Click here to view the flier with registration details for events across NSW in 

February and March 2013

February: Albury, Deniliquin, Parkes, Ryde, Bankstown, Lismore

March: Bateman's Bay, Wollongong, Campbelltown, Penrith, Taree, Maitland, Gosford

Our members who have attended After school - what then workshops with Family Advocacy recommend them to other families.

(US) National Center for Prenatal and Postnatal Down Syndrome Resources: new online clearinghouse

A wealth of high quality information for expectant and new parents, their families and the professionals that support them:

The (US) National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky's Human Development Institute oversees three medically reviewed programs that complement each other in providing important resources and information for new and expectant parents learning about a diagnosis of Down syndrome: Brighter Tomorrows, Lettercase, and Down Syndrome Pregnancy.

These programs also offer valuable resources for medical professionals delivering those diagnoses.

The National Center provides this clearinghouse of professionally recommended resources so that medical practitioners, expectant parents, and new parents have access to accurate, up-to-date, and balanced information about Down syndrome.

Wondering how to choose toys for your child with Down syndrome?

Let's talk - Down syndrome has some good advice on toy shopping, both for toys marketed as 'therapeutic' or 'developmental', and those that kids just love. Jennifer also has some savvy tips on managing (and avoiding!) very noisy toys.