DNews - Down Syndrome Victoria
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DNews February 2017

Talking Education workshop - 8th March              

Numbers are limited
Don't miss this opportunity!

For more info and to register for this event:

More information email: or phone: 1300 658 873

Family Fun Day - Sunday March 19

Family Fun Day is here again.  This coming March 19th you can spend the day with us enjoying all this great day has to offer.

Some of the things we've got in store are: 

Bouncy castle
The Glen Family Band
Animal farm
Sausage Sizzle
And more...

So come and meet us, meet old friends or make new ones.  We look forward to seeing you there.

11am - 2:30pm
Ashwood School
Montpellier Road
Ashwood, 3147

This event is free for Down Syndrome Victoria members.
Not a member?  Click here to subscribe.


Family Support update - Back to School  

Hello families,
Happy New Year! The year has been off to a good start in Family Support - catching up with families after the break, supporting new parents and meeting new babies, and talking to parents whose children are starting kindergarten or school this year.  I asked Jane, whose daughter Eliza just started to school to share her first week experience with us.

I have now settled into the Family Support role and Sue Blandford has officially moved into the role of ‘Information and Training Manager’. I will continue to work with Sue on presenting Early Days workshops for new parents and will continue to draw on her many years of experience in the Family Support role.
Looking forward to seeing you all at the Family Fun Day on March 19th. 
Dani - Family Support Worker
Eliza's first week at school

Eliza starting school
Eliza started school this week, and even though she has two older siblings, l felt quite nostalgic and a bit sad about our ‘baby’ starting school.  After two years of kinder, she was more than ready for the next big step.

The first day wasn’t quite the Hallmark moment I was hoping for, as Eliza charged through to her classroom, didn’t wait as asked to, and was generally a bit stroppy as she picked up on the tension in the room.  We decided it was best to leave her to get settled, rather than hovering, so we left her in the safe hands of her wonderful teacher and aide, and then spent the next 6.5 hours wondering how things had gone.  She had a great first day, interacted well with the other kids, but broke the rules on Day 1 by running onto the oval at break time, which is out of bounds for the prep students.  After explaining and showing Eliza the marked area for preps, by Day 3 she was a ‘superstar’, according to Eliza, and following all the rules, just like her classmates.

Tonight l tucked her into bed, read her a story and told her how proud I was, and what a big week we’d had, now that our baby had started school.  And then she said, “No mum, I’m not a baby; I’m a big girl now”. And I realised that she really was a big girl now!
 Best of luck to all students for 2017 – have a great year!

Research opportunity 

The Ritchie Centre are looking for participants aged 3 to 18 to be part of the research project The Sleep Study of children with Down syndrome (see details below).  The general policy of Down Syndrome Victoria is to support research that has the possibility to enhance the lives of people with Down syndrome.

Sleep in children with Down Syndrome

The Ritchie Centre is carrying out a study looking at sleep in children with Down Syndrome (aged 3-18 years).

They are interested in the daytime effects of poor sleep and obstructive sleep apnoea in children with Down Syndrome, and how these problems affect heart function and blood pressure.

Participation involves coming in at a time of your choice to visit one of our sleep specialists.  Each child will then wear a small activity monitor on their wrist for a week, recording sleep and wake patterns.  Their oxygen levels will be measured at home using a small device on the toe over one night. Parents will complete some questionnaires about their child’s sleep and daytime well-being and functioning.  Finally they will spend a night in Melbourne Children’s Sleep Centre at the Monash Medical Centre for an overnight sleep study.

During the sleep study, leads stuck on the skin measure brain activity and breathing during sleep. These measurements do not hurt the participants in any way.

  • Sleep studies are overnight from 7:00pm.
  • A parent is required to stay overnight, and staff will explain everything about sleep to you.
  • This research project has been reviewed and approved by the Monash Health Human Research Ethics Committee.
  • There are no costs involved and if we diagnose a sleep disorder you will be offered treatment options by our doctors.

For further information please contact:

Professor Rosemary Horne
The Ritchie Centre Phone: 8572 2827


Early Days Support Workshop 1


Down Syndrome Victoria will be hosting an evening gathering of parents with a young baby with Down syndrome on:

Monday 20th February  - 6.15pm to  9:15pm
Down Syndrome Victoria’s Office
18/71 Victoria Crescent
Abbotsford, 3067

The evening will be facilitated by Dani Kohn and Sue Blandford and include:
  • An introduction to Down Syndrome Victoria and our services
  • Exploring the potential of people with Down syndrome
  • Practical things to consider in the early days, including information on services & supports
  • A chance to browse our library of resources
  • Supper will be provided (please advise any specific dietary requirements)
  • The opportunity to meet and get to know some other families
  • Time to reflect on the journey so far and share ideas and experiences 
This session is part of a suite of workshops that are designed to support parents and the family unit. The intent of Workshop One is to bring parents of babies with Down syndrome into one space in which you can not only access information, but can meet, share and unite with others in a similar situation.

The sessions are relaxed and quite informal to allow for the sharing of experiences and learning from others.

We very much hope that this date is suitable and you are able to make it to this session, but if not, there will be a few more opportunities throughout the year.

To avoid disappointment, call early as numbers are limited.
Phone us at the office on  9486 9600 ext: 208 or email

(It is important to book so we know who to expect for catering
or if there are any last minute changes etc.)
Babies are, of course, welcome but the evening
is not suitable for young children


Micaela's story from her Mum

Getting fit
I thought I'd share a story today about my daughter Micaela Wilkinson as I wanted to encourage other families in caring for their children's health.
Micaela gradually gained weight. Lots of reasons. Like all our children with Down Syndrome, she loves food. But as she matured she started going out with different organisations like interchange, Club 21 etc, meeting friends for lunches and dinner and the prevalent foods were chips, nuggets, schnitzels, pasta, pizza, coke etc. Gradually over a period of a few years Micaela went from a slightly overweight young lady to very solid. At age 26 height 4' 10" she hit 75kgs. And from size 10 to 16.
I could see her struggling to walk, and eventually she damaged her knee, making her walking impossible. No more dancing. No more walking around our plaza and struggling at work. Eventually the little independence was lost, because she couldn't get herself to the train station and back. Therefore we were back to driving her around again.
After two weeks with a physio and exercise to build her knee, I took over from there.  I purchased a great exercise bike, and she commenced with 8 minutes, and built on this every day or two until she was at 1 hour. She does this easily now, and the resistance is at medium instead of low, which is where we began a few months ago.
The diet was another thing. I spoke to her and explained how important it was and if she trusted me enough I would undertake a diet plan.  She stuck with it rigidly. No more junk. She orders fish or chicken and salad everywhere she goes. She knows all about healthy foods to buy at our local plaza as she now only has chicken salad from McDonalds, and there are a few Vietnamese cafe's that make her chicken salad too. 
15kgs later, no more knee damage! Back to dancing and socialising, independence and free of pain.  We as parents need to keep our children healthy, free of pain, and teach them the benefit of healthy eating so that they can live a long, healthy life.


YMCA camp

On Sunday 22nd January, a group of 26 excited young adults bussed their way to Phillip Island for 5 days of sun, surf and scintillating activities.  This is the third camp YMCA have run for DSV adults, and so far it has been a very successful partnership.

The camp is organised and led by YMCA staff and supported by a group of hard working volunteers, who ensure a safe and fun adventure for those attending.  Activities included learning to boogie board and surf, while also learning first aid.  Team-building, archery, art and craft, swimming and cooking and eating, were other experiences for the campers.

We hope this will be an annual event, so keep an eye on email and Dnews later in the year.

Alannah McKeown - Young Citizen of the Year

Alannah McKeown has been announced Young Citizens of the Year for Wodonga.  Alannah who has Down Syndrome, is a swimmer and has represented Australia at an international level including the Special Olympics in 2012, the Asia Pacific Games in 2013 and the National Games in Melbourne in 2014.

For more of Alannah's inspiring story click here.

Alannah with her proud parents

Telescope Awards Event - Keziah Glenane wins

Telescope is an annual writing prize open to writers with disability.  It is an initiative of Scope’s Communication and Inclusion Resource Centre (CIRC).  Telescope provides a forum for writers to have their work read and discussed and for readers to tune in to the diverse voices of writers with disability.

Keziah Glenane has won first place in the non-fiction awards.  It was for a piece she wrote after she/we had to have her little dog put down late last year.  She wrote the article all on her own and her handwritten article was submitted.  Here's the typed-up version for us to enjoy.
My Dog Rusty
Rusty had a good life with me and all the Glenane family and the Eddy family as well. Keziah saved Rusty from the pound.  He was so happy I took him home.

We went to my house and I got him a dog treat and he liked a hug from me and gave me a kiss on my face. He liked to see Maureen in her house.  When I sat down on the chair he jumped on me and went to sleep on my lap.  Then he went off me and ran around the back yard.  Then he followed me around.  Then he went to my mum's house and he got a bed to sleep on inside.

He is the best guard dog at my house and Maureen's house and my old house with mum.  And sometimes we go for a walk up to the school farm where my mum works.  Rusty liked the kids there.  And they help look after my dog when I go to have lunch with my mum.  And my mum got some water for Rusty for the big walk.

And the first time when I got Rusty it was raining so we took him inside with us.  We didn't want him to get wet.  It was cold.  He is a good pet for me.

And Rusty liked to see Dexter, my best friend's pet dog.  And he played with Dexter.  My dog Rusty...he is black and has brown eyes looking at me.  He has got dog friends when we go for a walk.  And he likes bones to eat and then hide them around our house.

Living a Full Life

Are you an adult who has Down syndrome?  Are you living a life that makes you happy? Would you like to have your story published in a booklet to share with other people?  If you said yes to these questions then I would love to hear from you. You can write your story and send it to me, get someone to help you write it or I can chat to you and we can write it together.  A  clear, high quality (1 -2 MB) photo of you doing something you love would be great too.

Email or Phone Kerry Hands on 9486 9600 ext. 202

Here is an example of a story:

Four years ago I got the chance to do work experience at a café and loved being part of a team, providing an efficient service.  I did many different jobs, including using the commercial dishwasher, stacking the crockery and cutlery and assisting the chef with chopping vegetables and preparing bulk sandwich orders.  In the following year I registered with a Disability Employment Agency and found paid employment in another café. The case worker from the Agency organised the government wage subsidy for me.

My family and I like to visit local cafés and this proved helpful when a café manager offered me an ongoing position.  I worked there 3 days a week during the lunch hour period for over 3 years.  I enjoyed the friendly staff and tried to keep the customers happy with quick service.  I liked meeting new people in my local area and when we saw each other in the street, we’d say hello.  I took the tram and then walked 1km to the café.
Unfortunately this café recently closed but I have done a trial at another one, and I start next week.  Once again DVJS (a Disability Employment Agency) has been assisting with the job search, and supporting me into the new role.

While working part-time, I’ve also completed a number of certificates. Those related to hospitality included a certificate in workplace hygiene procedures through Hospitality Australia, a Certificate II in Hospitality and a barista course at Alkira.

But life has not been all work and service.  I practice yoga at least twice a week at a local centre.  I like twisting and turning, breathing and relaxing.  I also enjoy horse riding with RDA (learning a dressage routine), bike riding, walking and boogie-boarding in the surf. I am a member of two youth groups and get out and about in Melbourne with these friends and have occasional weekends away.  The Flying High group also enables me to go away sometimes and I’ve been to Broome, Darwin, the Gold Coast, Tasmania, Pacific Islands and New Zealand.  Once a week I go to a literacy class to keep improving my reading and writing skills.

Looking back over the last few years it is clear that many people have helped me to achieve my goal to work in a café in my local area (family, trainers in the hospitality field and general education, and staff on the job) and to balance work life with other interests I wish to pursue for enjoyment and fitness.

Job Access webinar - 24th February

You are invited to participate in a national webinar
JobAccess - Helping drive disability employment
JobAccess is the national hub for workplace and employment information for people with disability, employers and service providers.  Are you making the most from this service?
This webinar will highlight:
  •          The extensive range of resources, information and support provided
  •          A focus on the Employment Assistance Fund (EAF) and how to apply
  •          Case studies of JobAccess in action
  •          Question and Answer session
Presenter: Heather Hill, Team Leader JobAccess:  Heather has been working at JobAccess for five years. She has extensive experience in assistive technology and finding the most cost effective solution to disability specific barriers presented in the workplace. Heather’s past roles have included working in a spinal rehabilitation unit, an orthopaedic unit as well as in paediatrics, both in hospitals and in private practices. She also ran a successful private practice focusing on vocational rehabilitation and medico-legal work.
She has worked with a wide range of clients, from job seekers to victims of violent crime to children with pervasive developmental difficulties. With a diverse career that has taken her from South Africa to the United Kingdom to Australia, Heather has a wealth of knowledge and experience when it comes to health and rehabilitation.
To register click here

Time: 1.00pm-2.00pm
Webinar will be AUSLAN interpreted & live captioned


DSSA National Short Course Championships

Twylight Disco - 25th March


Events for 2017

There's so much going on here at Down Syndrome Victoria; training, workshops and family days.  Have a look at our event page to catch up with what's happening near you.

Call out for My Voice submissions

Would you like to share your achievements with our national Down Syndrome community? Here’s your chance!

We are looking for submissions to the ‘My Voice’ section of Voice, our members’ journal which is published three times a year. My Voice is a section devoted to letting you tell your story – perhaps you’ve just started a new job, or have attended an awesome DSV event, or have a special occasion or triumph that you’d like to share. We’d love to hear it!

Simply send a short paragraph about your news and a high resolution photo to accompany it to, and we’ll see if we can include it in the next edition of My Voice.

For further information, please contact Stephanie Papaleo.
Copyright © 2017 Down Syndrome Victoria, All rights reserved.

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