Read our latest news and browse our upcoming events.
Dear <<First Name>>,
I trust everyone had a lovely Easter and are enjoying the school holidays. We are looking forward to being able to once again organising some face-to-face events. We are hosting a virtual SWAN conference on Sunday, 20 June with a pre-conference dinner being held in most states on Saturday, 19 June.
SWAN Animations and Brochures If you have had not had a chance to view our new animation series, please visit either our website or YouTube Channel. We have two animations available: SWAN - Who Are We and SWAN - Supporting Siblings. We have two more animations coming soon around Searching for Answers and Genetic and Genomic Testing. You can also download our new brochure series from our website. The brochures include: SWAN - Who Are We , SWAN - Supporting Siblings and SWAN - Searching for Answers, Genetic and Genomic Testing and there is even a SWAN brochure to support Health Professionals assisting our families.
Submissions
Thank you to everyone who provided feedback to us for the Joint Standing Committee on the NDIS - Independent Assessments Inquiry. You can download and read our submission here. We continue to advocate where we can to stop the introduction of independent assessments. If you have not signed Bill Shorten's petition with regards to stopping independent assessments, I would encourage you to do so. SWAN has written to the new NDIS Minister Hon Linda Reynolds CSC about our concerns. I would invite you to do so as well. Every Australian Counts have a draft email you can send to Minister Reynolds.
If you would like to provide feedback on any of the below submissions, please email me by Friday, 23 April so we can include your feedback. We also encourage you to make your own individual submissions.
Bereavement SWAN was saddened to hear the news of the passing of one of our SWAN children last month - Charlie Fothergill. Our thoughts are with Linda, Toby, Chloe and Willow at this sad time. Many of our SWAN families knew Linda and her family well and attended Charlie's memorial service.
If your SWAN child has recently passed away and you would like us to pay tribute to them either in our Facebook group or newsletter, please email me. We understand that this is a very difficult and personal time for people and not everyone wants to share their news and we respect that. SWAN does have a Bereavement Facebook groupyou are welcome to join.
Best wishes
Heather Renton
CEO
SWAN Australia
Event Dates
April Wednesday, 21 April 8:30 pm - 9:30 pm (AEST)
SWAN Virtual Chat Session - Informal chat session with SWAN members with kids over 10 years old Please registerhere.
Saturday, 24 April 10:00 am - 11:30 pm (AEST) SWAN Mornington Peninsula Morning Tea - Rosebud Foreshore Park - weather dependent. Please registerhere.
Thursday, 29 April 8:30 pm - 9:30 pm (AEST)
SWAN Virtual Chat Session - Informal chat session with SWAN members
Please registerhere.
May
Melbourne Post Mother's Day Mingle - Date and venue to be confirmed
June Saturday, 19 June - Pre Conference Dinner (most states) - more details coming soon Sunday, 20 June - SWAN Virtual Conference - more details coming soon
We want to support you!
If you would like some support or if your SWAN child is in hospital, please let us know so we can send a care pack or assist you in any way we can.
Please email info@swanaus.org.auwith the subject line: Support
Now & Next Program
Kalparrin has teamed up with Plumtree to offer you a practical, FREE eight-week online program. Now & Next™ is an innovative, award-winning online program for all parents, carers of children, 0 - 14 years of age, who have a developmental delay or disability.
The course will help you identify your strengths, set goals, develop good relationships with health professionals and ultimately get good outcomes for your child and the whole family. The course is facilitated by trained and knowledgeable peer workers who have lived experience of parenting a child with developmental delay or disability.
Dates: Thursday, 29 April - 17 June 2021 Time: 10.00am - 12.00pm Cost:Free of charge for families not eligible for NDIS funding.
Register here.
Research Opportunity
Are you a parent of a child with a genetic epilepsy?
We are recruiting parents to provide feedback on co-designed videos with genetic epilepsy families. The videos aim to enhance caregiver mental health by increasing psycho-social supports and caregiver resources. Please click on the survey linkto become involved.Massimo’s Mission aims to make meaningful advances in the diagnosis and treatment of white matter conditions. The study is using genomics to provide more definitive diagnoses for families and has established a national registry to support ongoing research in this area.
Individuals and families with a diagnosed or undiagnosed white matter condition can connect with the research team by completing a confidential survey here.
To find out more, you can contact the research coordinator Eloise Uebergang on 03 8341 6382 or by email.Do you have a child aged 15 or older with an intellectual disability?
Queensland University of Technology researchers are looking for participants to engage in a study that aims to better understand parents' experience of disability and the transition to adulthood for their child. Participants will receive a $20 WISH Woolworths Group gift card after completing an hour-long phone interview. For more information on the project please contact Alice.
A New Driving Force Behind Safe Transport for Children with Disability
Complete the survey to win one of five $50 vouchers!
For families of children with disability and medical conditions, day to day transport can be a real challenge. If you have a child (under 16 years) with a disability or medical condition, MACA wants to hear about your experience. Please take our short survey today.
Every parent should have the peace of mind that their family is able to travel safely and comfortably.
SWAN Kids Virtual Art Exhibition
Calling all budding SWAN artists, this is your chance to express yourself through art!
We invite all SWAN parents to submit a photograph of their child's artwork. Unfortunately, due to time restraints, we had to postpone the art exhibition until later in the year. On the positive side, there is still time to submit some pieces of your child's art work for our virtual art exhibition, which will form part of a larger exhibition, the SWAN portraits project.
Ideally, the artwork will be drawn/painted on an A4 landscape piece of paper and once complete, photographed and the image and consent form emailed to SWANwith "SWAN artwork" in the subject line. Please submit all photographs of your child's artwork by Friday, 30 April 2021. Below are some hints on how to best photograph your child's artwork, courtesy of our SWAN photographer Bec Conci.
Size
A high-resolution image needs to be at least 1MB, preferably 2MB or greater. If the image has KB next to it, it is low resolution it won't be of higher enough quality to be included in the exhibition.
Light
To reduce the glare in images, the photograph needs to be taken in the shade. Think of an overcast day compared to a cloudy day. A cloudy day has no shadows, and a sunny day has very harsh shadows. So taking a photo by the window will allow the sun through and will usually create shadows or glare if you are shooting through glass. Look at the light in the room, and find a spot that has no shadows - this will be perfect- keeping in mind, you need it light enough to still expose the image correctly. Sometimes closing a see-through blind can give you perfect soft light.
Angle
To take an image of a flat lay item (drawing) the drawing needs to be completely flat. You need to have your camera on the direct angle above the drawing so the lines and the angles remain true. This can be achieved by moving the camera away from your face and directly over the flat lay, or by standing on a small step and leaning over the flat lay. The goal is to have the camera angle the same as the item you are photographing.
The SWAN Kids virtual art exhibition will form part of a bigger virtual art exhibition which is our SWAN portraits virtual exhibition. The SWAN portraits project was put together last year by SWAN Mum Kat Barlow and her friend Crystal Winterton. We had hoped to have toured the exhibited this year but unfortunately, our plans could not go ahead due to COVID-19.
This art exhibition is kindly supported by Illumina.
Facebook Groups
If you have not had a chance to join one of our state-based groups, I would encourage you to do so. These will help SWAN support more families, and allow our families to support each other, through increased opportunities for online contact and virtual peer support. The links to all our groups and our Facebook page are below.
