Source Kids Autumn 2018 - Victoria/Tasmania by Source Kids

ISSUE 15 | AUTUMN 2018

VICTORIA / TASMANIA

THE FUTURE IS BRIGHT: HOW TECHNOLOGY WILL CHANGE THE FUTURE FOR OUR CHILDREN CONTINENCE REVIEW – SPECIAL OLYMPICS – TRAVEL INSURANCE – NORRIE SYNDROME

When Calories count and so does Tolerance Introducing NEW Nutrini Peptisorb Energy, the new ready to use peptide-based feed specially designed for feed intolerance, maldigestion and malabsorption. Another addition to the tried and trusted Nutricia Paediatric Range.

PBS Listed 1st May 2017

The peptide-based feed specially designed for children who need more nutrition in a smaller volume and is easier on the tummy.

4 4 4 4 4 4 4

100% Extensively hydrolysed whey protein To help Ready-to-use, liquid semi-elemental feed children meet Energy dense 1.5kcal/ml and nutritionally complete their nutritional # Contains 50% MCT needs consistently 1 1 and promote Excellent compliance and GI* tolerance healthy growth. Easy to use, convenient and well-accepted1 For children 1-10 years of age (or 8-45kg body weight)

Contact your healthcare professional for more information. (Should be used under medical supervision)

1. Data on file, Nutricia UK Ltd. 2017. * Gastrointestinal # Medium Chain Triglycerides

Nutricia Australia Pty Ltd. Talavera Corporate Centre, Level 4, Building D, 12-24 Talavera Road, Macquarie Park, NSW 2113 Clinical Care Line 1800 060 051 www.nutriciamedical.com.au

NC3441-Apr17

FLEXIBLE SEATING FOR HOME, SCHOOL AND ON THE GO

At home, secures to most chairs by using attachment straps. On the school bus, transport the Special Tomato® in Push Chair. At school, secure the Special Tomato® in a classroom chair, or use it with the Mobile Base as your all-in-one classroom chair

contents

AUTUMN

2018

FEATURES AND ARTICLES

MEDADVISOR APP

8 The future is bright: how technology will change the future for our children 15 Continence aids product review 33 7 apps to help with sensory processing & self-regulation 35 Planning for your child’s future 36 What is a Special Disability Trust? 42 A guide to travel insurance 45 Special Olympics Adelaide 2018 51 Learning language with Lego 53 Norrie disease

A free medication management tool! Connecting you with your local pharmacy to enable you to manage and take medications safely, effectively and on-time. We think everyone needs to get downloading this one! Download on the App Store or Google Play. www.medadvisor.com.au

REGULARS 5 We Love 6 Welcome 12 Cooper’s travels 26 Family profile 28 Did you know... 40 Product feature – school bells are ringing 48 What do I do when…my child is dependent on co-sleeping? 55 Competition corner

S’UP – A SPOON FOR SHAKY HANDS Unlike a normal spoon, which requires your upper lip/teeth to pull content off, this revolutionary spoon requires you to tip food into your mouth. This utensil is helping those with cerebral palsy or shaky hands. Dishwasher safe, innovative in design, this is available for delivery to Australia. www.sup-products.com

WE LOVE

OUR FUTURE IS

SUE

The future is bright, with techno log to change th y set e future for our chil dren.

HIREUP Hireup is the online platform for people with disability and their families to find, hire and manage support workers who fit their needs and share their interests. www.hireup.com.au

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WE LOVE

THE LEMUR

Check this bad boy out! Do you have a backyard big enough and kids who would climb all over this for hours on end? The Lemur even includes a flying fox. It is height adjustable, powder coated in a colour of your choice and comes equipped with a trapeze and sling swing. Physio made easy donâ&#x20AC;&#x2122;t you think? www.funkymonkeybars.com

WONSIE Now available in larger adult sized bodysuits, Wonsie has something that will fit everyone! This soft cotton bodysuit is now available in more colours, more sizes and styles. Tube feeding access made easy whilst keeping fingers out of the way. They will keep wandering hands out of nappies and incontinence aids and help to prevent scratching from eczema. www.wonsie.com.au

WHEELCHAIR TROUSERS These have been a hit overseas and we dare say they will be here in Australia too! These trouser pants are tailor made. Sitting higher on the back so there is no gaping and they are also longer in the leg to compensate for sitting. Soft elasticated waistband and a roomy seat to accommodate pads. Available in grey, navy and black. www.willowbug.co.uk

COME WITH ME WRITTEN BY HOLLY MCGHEE AND ILLUSTRATED BY PASCAL LEMAITRE A girl, frightened by what she has seen on the news, simply wants to make the world a better place. Follow her journey to improve the world, to be kind and recognise that human connection is so important. How can one person make a difference? www.penguin.com.au

GOTO SEAT A supportive, adjustable seat for children, making daily tasks easier. It is lightweight and portable, yet provides ample upper body postural support for children with disabilities. Known for use on shopping carts or on top of dining chairs, it will keep your child involved and safe. Now available with a new pressure cushion made from memory foam. www.activerehab.net.au

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AUTUMN 2018

WELCOME

welcome

TO SOURCE KIDS SOURCE KIDS LIMITED PO Box 690, Noosaville QLD 4566 ABN: 36 614 552 171 www.sourcekids.com.au Send all letters and submissions to: editor@sourcekids.com.au

WRITERS AND CONTRIBUTORS Nicole Davis, Rachel Williams, Emma Price, Naomi Sirianni, Lucie Ancher, Cooper Smith, Natalie Roberts Mazzeo, Julie Jones, Kylie Martin, Ariella Lew, Carina Harding and Anna Martin.

Welcome to our first issue of 2018! It’s hard to believe it’s the middle of March and many of us are gearing up for school holidays…yet again! After moving my family from Tasmania to the Sunshine Coast in Queensland over the Christmas break, it’s no wonder the days, weeks and months have flown by. Moving states took me back to our early diagnosis days of ‘newness’ – finding a whole new therapy team, medical team, school, hospital, support workers and connections in our special needs world. It reminds me how important connections are – connecting with people, businesses, schools and the special needs community. And, it has certainly reinforced the value of what we do at Source Kids – connecting parents and carers with relevant, reliable and up-to-date information. 2018 will be a big year of creating connections at Source Kids with some pretty exciting things we can’t wait to release! Our team met in January for a planning session. In what was a big day or two (that rolled into the night over wine!) we’ve planned a year of fabulous magazine, online and social media content, plus some great events. After the successful release of our Victoria/Tasmania issue in summer alongside our national issue, we will continue rolling out our state-based magazines with Queensland coming in Winter and New South Wales/ Australian Capital Territory in Spring. This allows us to tailor content within the magazine so it is more relevant to each state. Our Source Kids Disability Expo in Brisbane on July 6-7 this year is nearly a full house already with some incredible sponsors, exhibitors and speakers lined up for the two-day event. And, I’m very happy to announce we will be taking the expo to Melbourne in March 2019! More details will follow so watch this space and follow us on social media for updates. Now after all the announcements, I’d better tell you what’s inside the pages of this, our Autumn issue! We look at technology and how it will change the future for our children including cutting edge projects and devices under development. We also review continence aids, look at travel insurance and planning for your child’s future, and bring you what’s on around the country.

ADVERTISING BUSINESS DEVELOPMENT MANAGER Naomi Sirianni – 0447 755 043 naomi@sourcekids.com.au ADVERTISING ACCOUNT MANAGER Kelly Wilton – 0499 017 354 kelly@sourcekids.com.au

DIGITAL CONTENT EDITOR Nicole Davis nicole@sourcekids.com.au

GRAPHIC DESIGN Richard Deverell, Dev Design & Creative www.devdesign.com.au

PUBLISHER / CEO Emma Price Editorial and advertising in Source Kids is based on material, written and verbal, provided by contributors and advertisers. No responsibility is taken for errors or omissions, and opinions expressed do not necessarily reflect those of the publisher. All material in Source Kids is subject to copyright provisions. No part of this publication may be reproduced without written permission by the publisher.

So, sit back, relax and enjoy the read!

DISTRIBUTION

Emma

Source Kids is distributed through therapy centres, hospitals, paediatricians, special needs schools and early intervention centres. For distribution enquires, contact info@sourcekids.com.au

Emma Price

CEO/FOUNDER

AUTUMN 2018

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WE LOVE WEEHOO IGO TURBO

IRISVISION The IrisVision is a wearable device with powerful magnification capabilities for people with low vision. The virtual reality device can be operated using a touchpad on the headset or via a Bluetooth controller. This opens up a whole new world and could bring much independence to its user.

Making family adventures more fun than ever before. The redesigned Weehoo iGo Turbo will make your child’s riding experience comfortable and safe. Easy to use with a quick release, one-handed seat adjustment, lower seat height for better stability and thick pedal straps to hold small feet. www.weehoo.com.au

www.visionaustralia.org

SKOOG MUSIC Lets get ‘hands-on’ with music! This squishy foam cube has been helping kids with disabilities find their inner musician. Software enables the user to make and play music and has adjustable sensitivity to suit a wide range of abilities. Skoog was developed for use in the classroom. Available from selected Apple stores across Australia. www.skoogmusic.com

SIGN UP TO RECEIVE FREE EMAIL UPDATES Keep up to date in between magazine issues, plus access competitions and other exclusive offers. Sign up at www.sourcekids.com.au

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AUTUMN 2018

BY LUCIE ANCHER

THE FUTURE IS BRIGHT: HOW TECHNOLOGY WILL CHANGE THE FUTURE FOR OUR CHILDREN

AUTUMN 2018

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WE are on the verge of a technological revolution, with the way we lead our lives set to dramatically shift, no more so than for people with a disability. Thanks to the rapid pace of change in technology, engineering and manufacturing, devices that were once considered futuristic are now in development. Organisations have finally begun to put the end user first and there’s a new breed of businesses with a genuine desire to achieve social benefit and equality. Here is a snapshot of some of the exciting projects and devices promising to enable and empower individuals.

ROBOTS TO REVOLUTIONISE OUR LIVES: It’s a concept that’s been confined to science fiction, but teleporting is now becoming a reality for people with a disability. Australian start-up Aubot has created a brain-controlled telepresence robot that speaks and moves. Users control it via a touchscreen tablet, cameras and android phone. “It can help people who have a disability or a long term illness go to school or work remotely,” Aubot CEO and founder Marita Cheng said. Unlike traditional screen-based communication tools, such as Facetime or Skype, Teleport gives the user an actual presence in the room making the social engagement more immersive. This year, 70 Australian children with disabilities or long-term illnesses will be given the chance to use the robot in their classroom.

stack a dishwasher, open doors and walk across uneven terrain. While not specifically designed for people with disabilities, the robots' broad appeal in this arena is obvious and exciting.

A WORD OF CAUTION WHEN IT COMES TO CARE: Replacing people with robots requires careful consideration to ensure invaluable benefits, such as human connection, are not lost. Associate Professor Helen Dickinson, director of the Public Service Research Group at UNSW in Canberra is part of a team investigating the potential of robots in care services. This research will help governments and organisations balance the risks and benefits. Using case studies from Australia and New Zealand, she said they hope to provide clarity and guidance about the best way to take advantage of new technologies. They also want to ensure equity of services and retain human interaction.

HARNESSING THE POWER OF TECHNOLOGY: Biomedical engineer Dr Jordan Nguyen is dedicated to creating life-changing technologies that are intelligent, futuristic and inclusive. Hitting his head on the bottom of a swimming pool as a young man forced him to contemplate a future with limited mobility. He made a full recovery, but it set his career on a new trajectory.

Ms Cheng said robotic devices like these would become more functional and affordable as technology, design and engineering evolve and, through economies of scale, the costs would eventually fall.

His social business Psykinetic is developing tools such as the fastest eye-controlled speech device, which enables people who are non-verbal to convert text to speech using their eyes.

“You’ll find robots in everyone’s households one day,” she said.

Another innovative design is bringing music into the lives of people with a disability via a music tool that relies on the electrical power of the eyes.

Perhaps the world’s most sophisticated robots are made by Boston Dynamics in the USA. The Google-owned company has shattered preconceptions about the limitations of new technology.

Another Australian keen to ensure the power of technology, both new and existing, is harnessed is Brisbane electrical engineering student Santiago Velasquez.

The range of robots has the agility of small animals. They can pick themselves up when they fall over, manoeuvre in tight spaces,

He has been blind in one eye with only three percent vision in the other since he was born.

“ THE NATIONAL DISABILITY INSURANCE SCHEME HAS COMPLETELY CHANGED THE GAME, AND IS STIMULATING A MARKETPLACE IN WHICH ENTREPRENEURS WITH IDEAS CAN GET IN AND BUILD NEW AND INNOVATIVE PROGRAMS.” www.sourcekids.com.au

AUTUMN 2018

His business, Eyesyght, aims to supercharge existing technology so the vision impaired can have a richer experience when using a smart phone, tablet or computer. The technology incorporates ultrasound, electrical impulses and haptic feedback into a surface to mimic the sensation of touch and convey visual information like maps or pictures. He hopes the technology could also enhance the development of robots by giving them a sense of touch.

SOCIAL ENTERPRISES A SAVIOUR: Laura and Jordan O'Reilly saw the barriers to employment and community participation their late brother Shane, who had cerebral palsy, faced when he left school. It inspired their not-for-profit organisation Fighting Chance, which provides invaluable work experience and training to overcome unemployment and social isolation. It’s launched two social enterprises: first, Avenue, which helps people develop and refine their entrepreneurial skill, and Jigsaw, which trains and employs people with disabilities to provide companies with services, such as digitising and managing their client’s documents. “When my brother left school in 2008, the future for him and for his peers was very bleak,” Fighting Chance CEO Laura O’Reilly said. “I am extremely pleased to be able to say that things have moved on a great deal. “The National Disability Insurance Scheme has completely changed the game, and is stimulating a marketplace in which entrepreneurs with ideas can get in and build new and innovative programs.” She said school leavers in the future would have vastly more choice and opportunity than ever before.

AUTUMN 2018

“People with disability have so much to offer our society and the rest of the community is finally catching up with that in terms of the opportunities available.”

ACCELERATING GREAT IDEAS: It’s not unusual for innovative start-ups to hit stumbling blocks. That’s where Remarkable comes in. It’s Australia’s first disability-focused accelerator.

One of 12 start-ups to benefit, Lusio Rehab, aims to make physiotherapy fun, portable and engaging for the 17 million people worldwide with cerebral palsy. Wearable devices and online games connect to smart TVs and mobile phones, providing daily physiotherapy, monitored externally by clinicians or carers.

The 16-week program ‘accelerates’ disability technology start-ups by providing them with seed funding, skills and access to corporate and investor networks.

MAKING IT HAPPEN WITH MAKE-A-THONS AND MAKERSPACES:

Founder Pete Horsley said its ultimate aim was to recruit start-ups that are using technology to grow inclusion among people with a disability.

They are physical places where people from diverse backgrounds with different expertise

Makerspaces are a new concept helping to address old problems.

www.sourcekids.com.au

can come together to innovate and create. In regional Queensland, a disability support service has developed a makerspace that encourages individuals with disabilities to collaborate directly with engineers, IT professionals, artists, health professionals and designers to create solutions to problems that affect their lives. CLS (Community Lifestyle Support) CEO Damien Tracey said co-design was critical because users of the technology had the deepest understanding of what they need. “The time is fast approaching where people with disability will no longer be passive recipients of technology created for them by ‘experts’; increasingly people with disability will take the leading role in the design and prototyping process,” he said. Last year they held a make-a-thon, a concept pioneered by Israeli not-for-profit Tikkun Olam Makers (TOM) In a 72-hour period people gather to identify problems and make prototypes that form practical solutions. The session highlighted to Mr Tracey how rapid technological innovation and new ways of working together is creating opportunities that most people cannot yet comprehend. “It is still early days when it comes to the disability sector’s genuine understanding of the power and potential of the next wave of assistive technology. “The idea that a modified drone controller system could be custom developed to allow a beef producer who happens to have a spinal injury to muster cattle independently is just not something most people are thinking about.

“ CHILDREN ARE NATURALLY CURIOUS, CREATIVE AND INVENTIVE AND NOT AS CONSTRAINED AS WE CAN SOMETIMES BE AS ADULTS IN OUR THINKING,”

“However, this is definitely changing.”

INVENTORS OF THE FUTURE: If the creations of Australia’s littlest inventors are any indication, the future is bright. Annual national competition littleBIGidea gives children like Amelia Fox, 8 the chance to turn their creative solution to a real-world problem into a reality. After seeing her parents struggle to get her brother in and out of a wheelchair, the Victorian girl devised a portable wheelchair hoist with a fabric hoist in the seat cushion that can be attached to hooks to help carers lift someone. “Children are naturally curious, creative and inventive and not as constrained as we can sometimes be as adults in our thinking,” Origin’s littleBIGidea spokesman Stuart Osbourne said. “The role of educators, parents, and industry is to work together to find ways to encourage and foster these skills, because these skills are what will help children succeed and thrive in the workplace of the future.”

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AUTUMN 2018

COOPER'S TRAVELS Cooper Smith is 12 years old and a keen traveler and foodie. Cooper uses a manual wheelchair while he travels as he has dystonic quadriplegia cerebral palsy. You can see more of Cooper’s adventures on Instagram @thewheelfoodie

EACH YEAR I LOVE TO GO SURFING AT POINT LEO HERE IN VICTORIA. In both January and March, I get to zoom in on a surfboard with so many people clapping and cheering. It is such a fun big day with Disabled Surfers Association (Mornington Peninsula Branch) I love catching up with old friends and making new ones. DSA runs programs all over Australia and I would highly recommend it for a fun day out and adventure! It’s all about surfers supporting surfers and they have many ways to get each person on a board. I go on my knees and my next goal is to stand up! They have beach wheelchairs and it means that everyone can surf and have fun.

BEST SEAT IN THE CLASS!

Finding the right kind of seating for children with special needs is an important part of the equation in the classroom. Specialised, adaptive seating will ensure correct positioning, which is known to have a positive effect on a child’s ability to learn and improve the skills they need to achieve important developmental milestones.

www.pmegroup.com.au

PH: 1300 131 884 www.facebook.com/pme4thosespecial2u PME-Source-Kids-Ad-0218-V03.indd 1

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15/02/2018 9:20 am

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Be Prepared in Case of an Emergency A fire extinguisher within reach inside your vehicle can be useful in an emergency or to quickly put out a small, smoldering fire. Vehicle Fire Safety Tips • Make sure that everyone has exited the vehicle. • Call 000 and notify the fire brigade before attempting to extinguish the fire. • Use your extinguisher only to keep a small, smoldering, contained fire from growing or to create a safe pathway from the vehicle. • Read the instructions and become familiar with your fire extinguisher’s parts and operation BEFORE a fire breaks out.

Quell has a wide range of fire safety products that will help keep you and your family safe.

Visit quell.com.au to find out more. Available from major retailers around Australia

Discreet, fashionable containment swimwear for confidence and peace of mind

General Store

BrollySheetsGeneralStore.com Waterproof Cotton Boxer Shorts

Mr & Ms Abilityâ&#x20AC;&#x2122;s containment swimwear not only gives special needs children the confidence and comfort they deserve, but also provides parents and carers peace of mind.

In our first fashion forward collection, we are offering two nappy skirts, two board shorts, an optional extra support nappy and a matching long sleeve rash vest.

Specialty Waterproof Clothing & Bed Pads now available

Waterproof Clothing Protection

Absorbent Bed Pads with Wings

Having a skirt and the shorts over the actual nappy gives our special people the dignity, comfort and gorgeousness they deserve!

8/252 Allambie Rd, Allambie Heights NSW 2100 â&#x20AC;˘ (+61) 2 9451 6003 www.mrandmsability.com

AUTUMN 2018

mr&msability

mrandmsability

Brolly Sheets General Store is a registered provider to the NDIS

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PRODUCT REVIEW

CONTINENCE AIDS DISPOSABLE PANTS TODDLERS & CHILDREN

TODDLER & CHILDREN / YOUTH & ADULTS TODDLERS & CHILDREN

THANKYOU NAPPIES Age/weight: 0-24+mth/0-16+kg (6 ranges) Absorbency: www.thankyou.co

TODDLERS & CHILDREN

BAMBO NATURE

HUGGIES PULL UP NAPPY PANTS GIRLS AND BOYS*

Age/weight: 0-6+yr 0-18+kg Absorbency: www.bambo-nature.com.au

Age/weight: 0-18+kg Absorbency: www.huggies.com.au

TODDLERS & CHILDREN

ABRI-FORM JUNIOR

DRYTIME YOUTH PROTECTIVE UNDERWEAR

Age/weight: 5-15yr Absorbency: www.abena.com

Age/weight: 17-56kg Absorbency: www.medline.com.au

YOUTH & ADULTS

ABRI-FLEX* Size: Various Absorbency:

TODDLERS & CHILDREN

www.abena.com

Size: S, M, L, XL Absorbency:

MOLICARE MOBILE PULL UP PANTS* Size: S, M, L & XL Absorbency:

YOUTH & ADULTS

Age/weight: 9-25+kg Absorbency: www.babylovenappies.com.au

YOUTH & ADULTS

www.moli.hartmann.com.au YOUTH & ADULTS

www.unicarehealth.com.au

YOUTH & ADULTS

BABYLOVE NAPPY PANTS AND TRAINING PANTS*

YOUTH & ADULTS

AMD PULL UP PANTS*

TODDLERS & CHILDREN

TENA FLEX* Size: S, M, L, XL Absorbency:

MOLIMED PANTS ACTIVE Size: M & L Absorbency: www.moli.hartmann.com.au

YOUTH & ADULTS

www.tena.com.au

TENA PANTS*

Size: S, M, L, XL Absorbency:

www.unicarehealth.com.au

YOUTH & ADULTS ABSORBENCY GUIDE

HEAVY

VLESI PANTS* Size: M, L, XL Absorbency:

www.independenceaustralia.com.au

www.sourcekids.com.au

PREVAIL BRIEFS Size: S, M, L, XL Absorbency: www.brightsky.com.au

CELLO ALL-IN-ONE Size: S, M, L, XL Absorbency:

MEDIUM

www.independenceaustralia.com

LIGHT

*Range available

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DISPOSABLE PADS

0-ADULT

EENEE COMPOSTABLE UPADS

WEENEES ZERO WASTE FLUSHABLE PADS

Age/weight: 0-Adult Absorbency: www.eenee.com

SNAZZIPANTS PREFOLD 6 PACK

REUSABLE/UNDERWEAR

SNAZZIPANTS ALL-INONE CLOTH NAPPY

SNAZZIPANTS WATERPROOF NAPPY COVER

Age/weight: 1mth-2yr, 4-14kg Absorbency:

Age/weight: 1mth-2yr, 4-14kg Absorbency: www.brollysheetsgeneralstore.com

www.brollysheetsgeneralstore.com

SNAZZIPANTS POCKET NAPPY

WOXERS WATERPROOF BOXER SHORT

DBRIEF WATERPROOF UNDERWEAR

Age/weight: 1mth-2yr, 4-14kg Absorbency:

Age/weight: 4-10yr Absorbency:

Age/weight: 0-18+kg Absorbency:

www.brollysheetsgeneralstore.com

EENEE PULL UP PANTS

CONNI KIDS TACKERS AND TACKERS SPORTS

MOTHEREASE BEDWETTER PANTS

APPLECHEEKS UNIVERSAL CONTINENCE AID

Age/weight: 1-8yr, 7-25kg Absorbency: www.eenee.com

Age/weight: 2-14yr Absorbency: www.conni.com.au

Age/weight: 3+yr, 13-27+kg Absorbency: www.apikali.com.au

EENEE UNDIES

BONDS UNDERWEAR WITH BUILT IN PAD*

EENEE PULL UP GRIPPER PANTS

CONNI LADIES CLASSIC AND ACTIVE

Age/weight: 5+yr Absorbency: www.eenee.com

Age/weight: 2-16yr Absorbency: www.nightnday.com.au

Age/weight: 8+yr Absorbency: www.eenee.com

Age/weight: 16-80+yr Absorbency: www.conni.com.au

CONNI LADIES LINERS

CONNI MEN’S OSCAR AND KALVEN

CONNI MEN’S INCONTINENCE PADS

SEAMFREE FULL BRIEF AND BIKINI

Age/weight: 16-80+yr Absorbency: www.conni.com.au

Age/weight: 10+yr Absorbency: www.modibodi.com

Age/weight: 5+yr, 13-45kg Absorbency: www.apikali.com.au

*Range available 16

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REUSABLE/UNDERWEAR

MOLIPANTS SOFT AND COMFORT

PROTECHDRY MEN’S TRUNK AND BRIEF

Size: & S, M, L, XL, XXL, XXXL Absorbency: www.moli.hartmann.com.au

Age/weight: 14-90+yr, 45-110kg Absorbency: www.protechdry.net.au

PROTECHDRY WOMEN’S FULL AND BIKINI BRIEF

DBRIEF MEN’S WATERPROOF UNDERWEAR

Age/weight: 15-90+yr, 45-90+kg Absorbency: www.protechdry.net.au

DBRIEF LADIES WATERPROOF UNDERWEAR Size: XS, S, M & L Absorbency: www.brollysheetsgeneralstore.com

Size: S, M & L Absorbency: www.brollysheetsgeneralstore.com

DEPEND UNDERWEAR Size: Various Absorbency: www.depend.com.au

TOILET TRAINING

SNAZZIPANTS DAYTIME TRAINING PANTS

BABY BEEHINDS TRAINING PANTS

www.brollysheetsgeneralstore.com

Age/weight: 3+yr, 10-24+kg Absorbency: www.apikali.com.au

RUMPAROOZ LIL LEARNERZ

BUMMI’S POTTY PANTS

Age/weight: 1.5-3yr, 12-18kg Absorbency:

Age/weight: 1-7yr, 7-30+kg Absorbency: www.apikali.com.au

Age/weight: 1-6yr, 8-18+kg Absorbency: www.apikali.com.au

GROVIA TRAINING PANTS Age/weight: 1-6yr, 8-16+kg Absorbency: www.apikali.com.au

CONTINENCE SWIMWEAR

MR & MS ABILITY Age/weight: 20-50kg Absorbency: www.mrandmsability.com

KIDS INCONTINENCE SWIM SHORTS Age/weight: 3-14yr Absorbency: www.nightnday.com.au

EENEE SWIMMERS

ADULT CONTAINMENT SHORTS

Age/weight: 5+yr Absorbency: www.eenee.com

Age/weight: 16-80+yr Absorbency: www.conni.com.au

ABSORBENCY GUIDE

CONNI KIDS CONTAINMENT SWIM SHORT Age/weight: 2-16yr Absorbency: www.conni.com.au

HEAVY

MEDIUM

LIGHT

*Range available www.sourcekids.com.au

AUTUMN 2018

EENEE DISPOSABLE UPADS

...your fun new go to continence product! Combined with our reusable Little Pull-uPs or Gripper Pants they are your comfiest, most breathable and most sustainable option! We are NDIS registered and can add these to your plan if you have consumables listed. Comfort, quality & dependability

! Eenee Nappies www.eenee.com

eenee@eenee.com.au • 03 6225 3457

Order online at www.eenee.com and use SOURCEKIDS in the Voucher box when ordering to receive a 10% discount off your order!

Conni Kids Bed Pads AUSTRALIA’S LEADING REUSABLE BRAND QUICK & EASY: Eliminates complete bedding changes. One minute bed change! Machinewashable and dryer safe. FOUR LAYER PROTECTION & CAPACITY: Soft polyester top, quick-dry absorbency, with breathable waterproof backing. Holds up to 2500mls over an 8 hour period.

REUSABLE & COST SAVING: Advanced design for nighttime toilet training & includes FREE toilet training kit. Suitable for most beds and cots, measurements: With Tuck-Ins 100x100cm / Without Tuck-Ins 85x95cm LAB TESTED & CHEMICAL FREE: Conni Bed Pads are Oeko-tex accredited, PVC and Formaldehyde free, safe to use against the skin.

See all our Conni Kids products at www.conni.com.au/kids

Personal experience with special needs children Cloth Nappy Doctor assistance with over 20 years combined experience with babies, children and older children. • • • • •

Modern cloth nappies Incontinence aids Swim pants for all ages Sensory and feeding products NDIA provider

email - contact@apikali.com.au

M ApikaliModernClothNappies www.apikali.com.au www.clothnappydoctor.com.au

DISABILITY

EXPO 18

AUTUMN 2018

BRISBANE CONVENTION & EXHIBITION CENTRE 6 - 7 JULY, 2018 Register online to receive updates in the lead up to this event.

www.sourcekids.com.au/expo

COMING TO MELBOURNE IN MARCH 2019! www.sourcekids.com.au

Stylish wheelchair clothing for children and teens

TO SOURCE KIDS BE THE FIRST TO RECEIVE EACH ISSUE OF SOURCE KIDS DIRECT TO YOUR LETTERBOX!

15% oﬀ

when you use the code sour cekids at checko ut

For just $35 for parents and families, or $55 for organisations, you’ll receive four issues of the magazine.

Subscribing is simple, online at

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Willow Bug takes the drama out of dressing, with clothing that ﬁts easily over heads, legs, arms and wheelchairs in kid friendly colours and prints.

(on Subscribe page).

www.willowbug.co.uk Follow us on

WE HAVE

We specialise in fun and functional equipment for special needs children across Australia. • More than 150 products available for trial • A fully-qualified team passionate about helping children live, laugh and play • Our very own Product Consultant based in Townsville

07 5597 4321 | info@specialneedssolutions.com.au

le play Modular and portaebn and fitness equipm t. , swings, ht-adjustable monkey bars Choose from a range of heig to meet pted ada be can that ent ipm climbing and hanging equ r. doo r you to d vere family. Deli the needs of your child and

Shop online or phone us to chat about your speci fic requirements • www.funkymonkeybars.com

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YOUR CHOICE YOUR CONTROL

30-31 MAY 2018 CLAREMONT SHOWGROUND, WA

16-17 MAY 2018 MELBOURNE SHOWGROUNDS, VIC Pre registered delegates will receive: Free

Free

Entry

Parking

Coffee

Conference Program

Media Partner

Stability and Comfort from HIA

Leggero 3 2 1

Leggero buggies are designed to fit each child precisely, providing varying degrees of postural support while facilitating functional activities.

1. TRAK Tilt-in-space function, superior positioning and postural support, and a high level of growth adjustability, makes TRAK a great wheelchair alternative.

2. DYNO Highly adjustable buggy with excellent postural support and individual wheel suspension for added comfort – the DYNO is a dynamic buggy for active children and parents.

3. REACH Adjustable seat-to-back angle, 3 fixed tilt-in-space settings, and the smallest footprint when folded away – REACH is an ideal option for children who do not have complex positioning needs.

Breezi

The Breezi chair is a solution for children with behavioural and postural needs. It can be customised with a wide range of accessories to cater to the individual child.

Benefits Easily adjustable and grows with the child Supports can be added to create optimal seating positioning for improved posture and comfort Simplistic wooden design means it can be incorporated into any home

For a free demonstration quote code ‘HIAKIDS’ on 1300 499 282 or email sales@hiaus.net.au

Healthcare Innovations Australia PTY Ltd PO Box 34 Salisbury South BC, SA 5106 Australia T: 1300 499 282 F: 08 8125 5990 Email: sales@hiaus.net.au www.sourcekids.com.au Supporting your needs

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Bringing fun, practical and unique products to children with special needs in Australia.

Australiaâ&#x20AC;&#x2122;s newest online disability store has just launched with a great range of products including EazyHold straps, EZPZ mats, Reflo cups and Snug cups. The range is growing daily so make sure you subscribe to receive all the latest product releases.

www.childrensdisabilityproducts.com.au

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Freedom is choosing where you want to explore.

Wizzybug! Exciting and fun powered mobility option for young children Wizzybug is a powered vehicle for young children to experience early years in an adapted mobility toy. It has a range of controls and seating adjustments and can be used with close adult supervision indoors and outdoors in accessible areas such as level gardens, playgrounds and parks enabling children to have a fun experience with their first wheels. Independent mobility has been proven to assist and encourage important developmental skills, along with giving your child the freedom to safely explore their environment.

- Suitable for children aged between 2-5 years (maximum weight 20kg) - A range of control options including joy stick, specialist switches and remote operation - Easily transportable â&#x20AC;&#x201C; dismantles quickly - Has a standby charge of 2 weeks and will usually run for a few days based on moderate use - 8km range on full charge - Maximum speed of 2.9km/hr (speed can be limited)

Wizzybugs can be hired or purchased from CP Tech.

Call us on 1300 106 106 to find out more.

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AUTUMN 2018

Special Siblings and Young Carers Every child deserves a childhood Growing up can be tough, but imagine doing it while taking on adult responsibilities like medical care, emotional support and personal care tasks for a brother, sister or parent with a disability, illness or addiction. We support special brothers and sisters and Young Carers who do all of this every day and more. With both long term and short term support programs available we recognise, celebrate and amplify these kids every single day. Want more information? We love to chat!

info@littledreamersonline.com

0433 818 212 ! $ @LittleDreamersAustralia " @LittleDreamers

www.littledreamersonline.com

Making coordinating disability care easier, and better. Coordinating care for a person with a disability is a shared journey of responsibility and rewards. To reach a personal milestone however small is something to be celebrated. Success is the partner of challenge and is only achieved through incredible effort and sacrifice from families. We innovate so your family can flourish. Sameview is building a technology platform for care coordination; giving families the confidence to build their own team, set their own goals, and walk their own path. To register and to find out more about sameview, please visit www.sameview.com.au

!$ sameviewaus

Need help? Variety is here for you. We provide... GRANTS We grant a range of equipment to provide practical help to kids and organisations in need. PROGRAMS We run programs to educate and empower kids in need. SCHOLARSHIPS We give scholarships to encourage the talents of kids in need. KIDS EVENTS We hold events to engage & bring joy to kids in need & their families.

Visit variety.org.au/vic 24

AUTUMN 2018

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WHAT'S ON CALENDAR

n m u t Au MARCH

19 Kids ArtyFarty Fest 2018 1-31 Disabled Surfers of Australia Beach Days disabledsurfers.org

16 National Day of Action against Bullying and Violence bullyingnoway.gov.au/NationalDay

18 Sensory Movie Screenings – Paddington 2 www.eventcinemas. com.au/EventsFestivals/ SensoryFriendlyScreenings

Warringal Parklands, Heidelberg www.facebook.com/banyulearts

21 World Down Syndrome Day www.downsyndrome.org.au

24 – 16 April Launceston Alive Easter Festival launceston.org.au

26 Purple Day, International Day for Epilepsy Awareness

APRIL 1

National Smile Day

www.humourfoundation.org.au

2 World Autism Awareness Day www.autismawareness.com.au

8 Traffic Jam in my Brain Workshop www.sensorytools.net

2 – 30 Autism Awareness Month

www.autismawareness.com.au

www.epilepsy.org.au

18 Run for the Kids, Melbourne

30 – 2 April Melbourne Easter Show

www.runforthekids.com.au

www.melbourneeastershow.com.au

MAY 6 Wishbone Day for Osteogenesis Imperfecta www.wishboneday.com

13-19 F ood Allergy Awareness Week www.foodallergyaware.com.au/

15-12 National Families Week nfw.org.au

16-17 A TSA Independent Living Expo Melbourne Showgrounds, VIC www.atsaindependentlivingexpo.com.au

17 Global Accessibility Awareness Day globalaccessibilityawarenessday.org

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AUTUMN 2018

Martin FAMILY PROFILE

MEET THE

FAMILY

OUR FAMILY CONSISTS OF:

I met Nick 15 years ago while I was on work experience and six years ago we were married. We now have two adored sons William, 4 and Mitchell, 1. Then of course there is me, Anna – wife, mother and proud chief organiser of our tribe.

WHERE DO YOU LIVE? Nick and I are originally from Adelaide, but now we call Melbourne’s South Eastern suburbs home and couldn’t be happier.

different seizure types and not every seizure involves a loss of consciousness or convulsions.

I went to a number of different doctors who waved me off as a first time, over protective mother. I desperately wanted to believe them that everything was ‘normal’ but I knew otherwise. When putting William to bed every night, I promised that the next day I would make this better. The fact I couldn’t stop my son’s suffering was destroying me. As a last resort I went to the Emergency Department at the Monash Children’s

Hospital and it was one of my best decisions. Within a week we had a diagnosis and met our fabulous neurologist, who has been there ever since supporting our family through our toughest battle.

IS YOUR CHILD IN SCHOOL? HOW ARE THEY DOING? William attends an Early Education Program at Bayside Special Development School two days a week and a mainstream child care one day a week. We spent a lot of time debating the right education setting for William. It was not an easy decision as, like all parents, we want William to have the best possible chance to reach his full potential. William struggles with new routines and environments but he has settled into the Early Education Program immediately. William’s confidence has flourished with the small class sizes, individualised daily activities and the safe, caring environment. As a result of this, we have seen steady improvement across all areas of his development but most importantly William is happy. For the first time he has made his own friends who he talks about with us by name. This sense of belonging has helped in all areas of his life.

WHAT IS YOUR CHILD’S DIAGNOSIS AND HOW DOES IT AFFECT THEM? William’s current diagnosis is Epileptic Encephalopathy – Infantile Epileptic Spasms and Global Developmental Delay. When he was initially diagnosed he was having up to 13 cluster seizures a day and these were just the ones that we could see. His neurologist told us there was even more activity happening beneath the surface that we weren’t aware of. It took us a year to get these seizures under control but now we are so very grateful to have been seizure free for over 18 months. Unfortunately, in our case there is a lot more to epilepsy than just the seizures you see. Although we have the seizures under control, William still continues to fight epilepsy on a daily basis. There have been delays across all areas of his development, behavioural and cognitive impacts and sleep has been a constant issue. Then the medications that we are so reliant on to control his seizures also have a whole list of serious side effects including (but not limited to) increased appetite, tremors, fatigue, insomnia, mood changes and behavioural impacts. Despite these challenges, William gets up and tackles every day with everything that he has to give and I couldn’t be prouder of him.

WHAT LED TO THE DIAGNOSIS? William was happy and developing normally until 15 months. I then returned to work, William began child care and our world as we knew it started crumbling. William became increasingly irritable, lost ability to focus, sleep became an even bigger issue and he seemed to fall over more than his peers. Over 2-3 months things worsened, and William started having more unexplained falls, which we later learned were seizures. I have since learnt there are about 40

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I HOPE BOTH MY SONS FIND ACCEPTANCE, LOVE AND HAPPINESS IN THEIR LIFE. WHAT THERAPIES DOES YOUR CHILD DO? William is currently doing speech therapy, mainstream swimming lessons and attends a specialised playgroup that is run through Bayside Special Development School. As William has delays across all areas of his development, we have had to prioritise which areas to focus on with therapy. These priorities will continually evolve as William develops. Finding the balance between therapies, development and living life has been important for us. William is a child and like every other child, deserves to enjoy his childhood. I believe that scheduling in rest and play are just as important as therapies.

WHAT ARE YOUR GOALS FOR THE YEAR? 2018 is another big year for our family. We will all have a new routine to adjust to as I return to work after maternity leave and Mitchell begins child care. Another big goal for 2018 will be familiarising ourselves with the NDIS and working through how that can best benefit William. 2018 brings more big decisions as William is eligible to start school in 2019. I will be working with William and his team on all areas of his development to prepare him for this transition.

WHAT ADVICE WOULD YOU SHARE WITH SOMEONE STARTING OUT ON THE SPECIAL NEEDS JOURNEY? It may seem overwhelming right now but stop for one second and allow yourself to breathe. Focus on the simple things and what is truly important. Ignore all the ‘what ifs’ and seek out the good news stories. Hold

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on to positivity and hope with everything you have. Take it day by day. Be kind to yourself. Surround yourself with people that listen to you, believe in you and encourage you – you can do this but you don’t have to do it alone.

AND WHAT’S THE MOST ANNOYING OR UNHELPFUL ADVICE YOU’VE EVEN BEEN GIVEN? Unhelpful things that have been said to us include: “But he looks so healthy” Epilepsy is not always a battle you can see. “Was that a seizure” 65 million people worldwide live with epilepsy – educate yourselves please! “I don’t know how you do it” Actions speak louder than words. If you see people are doing it tough, jump in to help. Drop off a meal, organise a cleaner or leave a care package for the whole family to let them know they are loved.

WHAT DO YOU DO FOR YOU TIME? This is a tough one! I make a conscious effort to exercise 2-3 times a week. This boosts my energy levels and is one of the few activities that shuts off my brain. My passion project is my Instagram/ Facebook Community called “More Than Epilepsy”. This is a positive and supportive space for people who have been impacted by epilepsy and for those who want to learn more. By openly sharing our journey, I hope to help break down the epilepsy stigma and build a more accepting world for the brave Epilepsy Warriors like William.

WHAT ARE YOUR HOPES FOR THE FUTURE? While William’s diagnosis has not changed my hopes for the future, it has clarified things for me and reminded me what is truly important in life. I hope both my sons find acceptance, love and happiness in their life. If they can achieve this, I will feel like we have succeeded as parents and I don’t ever intend to stop fighting for this.

WE WOULD NEVER MANAGE WITHOUT THE FOLLOWING… There are some truly special people in this world and we are beyond grateful for them. Special shout outs go to: • The Monash Children’s Hospital • Our Neurologist Associate Professor Michael Fahey • Our Speech Pathologists Becci Torode and Jo Burnell • Bayside Special Development School with extra special mention to Carly and Alex • Our OT Lauren Gingold from Noah’s Ark Malvern • The team at Swimsafe Murrumbeena • All the beautiful parents from the Epilepsy Parents Australia Facebook Group

AUTUMN 2018

DID YOU KNOW...

ABOUT SPECIAL NEEDS CAMPS AND RETREATS?

There are a number of camps and programs operating around Australia for children with special needs and their family. Options range from dedicated camps for children with disabilities, camp experiences where the whole family is welcome and also camps just for siblings. Here we take a look at just two organisations running wonderful experiences for all involved.

FLYING FOX Flying Fox is a NDIS registered Victorian youth-led organisation which provides awesome social opportunities for young people with a disability. Their team of passionate young adults strive to create lifechanging camp experiences enabling young people with a disability to have fun and make friends in a safe environment. The team at Flying Fox work hard to make sure that no-one is left out of the camp experience regardless of their support needs. They have a high staff to volunteer ratio and they’re willing to get creative and go the extra mile to make sure everyone has the opportunity to participate. According to Dean Cohen, CEO and Founder, they’ve never had to turn away a prospective camper based on their support needs. Some of their support elements include having active overnight support, high staff/volunteer

ratios, professional support staff such as psychologists and nurses present on the camp sites. During the camps, participants are buddied up with two young adult volunteers and together they will be challenged to go outside of their comfort zone and participate in a whole range of exciting activities. Activities in the past have included ropes courses, kayaking, swimming, roller blading, musical instrument making, drama, drumming, a magic show, and every camp finishes off with a talent show where everyone is able to get up and show off their skills in an encouraging and warm environment. Dean tells us that the goals for participants vary greatly. Many young people with a disability get involved with the organisation as a stepping stone to more mainstream involvement. They can gain confidence in themselves and their own ability to break

out of their routine and to be away from home. For many other participants, Flying Fox camps are a haven where they can come along to each camp, year in and year out, and just have the time of their lives. Siblings of children with special needs are also on the Flying Fox radar. Their SOCS (Siblings of Camp Sababa) program are a fun break for siblings providing an opportunity to connect with other kids in the same boat and to have a great time in a supportive and inclusive environment. The other strand of Flying Fox’s work is their focus on educating young adults about disability. Since their launch in 2014, Flying Fox has trained over 350 young adults to volunteer on their camps and to work with people with a disability. Their five-day volunteer training program is complemented by a suite of professional development opportunities, including a Certificate III in Individual Support, as well as other specialised training such as PEG feed training and Auslan courses. The support needs of camp participants also drive educational opportunities – for example, the Auslan course was created when deaf or hearing impaired young people started attending the camps.

MANY YOUNG PEOPLE WITH A DISABILITY GET INVOLVED WITH THE ORGANISATION AS A STEPPING STONE TO MORE MAINSTREAM INVOLVEMENT. THEY CAN GAIN CONFIDENCE IN THEMSELVES AND THEIR OWN ABILITY TO BREAK OUT OF THEIR ROUTINE AND TO BE AWAY FROM HOME.

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Dean says that their goal is not that every volunteer will go on to work in disability in the future but that they will take the lessons they learn from Flying Fox and implement them in their own lives. It’s Dean’s hope that when this generation of Flying Fox volunteers become business owners and teachers and everything in between, they will be more equipped to provide inclusive opportunities for people of all abilities and backgrounds. He told us “If one of our volunteers becomes a cafe owner, the cafe will be physically accessible, the staff will be patient with those who take a little bit longer to order, and they will employ someone with a disability.” Flying Fox has run over 20 camps since their first in 2014, providing opportunities for over 200 young people with a disability. In 2018, Flying Fox is striving to grow and provide opportunities to new participants and also to provide more regular camp opportunities to their existing participants. If you would like to know more, the team are very happy to meet anyone who is interested in their programs to talk through what’s involved. You can get in touch at flyingfox. org.au or by emailing dean@flyingfox.org.au

SONY FOUNDATION CHILDREN’S HOLIDAY CAMPS The Sony Foundation is the charitable arm of the Sony Group of Companies operating in Australia. Since its inception in 1998, the Foundation has helped young Australians in need by funding life changing programs for those with special needs, facing cancer and those that have been marginalised from society. Among the programs that the Foundation supports is the Children’s Holiday Camp – a unique respite initiative that aims to give students with disabilities a fun weekend of growth and learning and provide their families with some time away from the daily challenges involved with raising a child with a disability.

THE THREE-DAY CAMPS, HOSTED AT HIGH SCHOOLS AND UNIVERSITIES AROUND AUSTRALIA, PAIR CHILDREN WITH SPECIAL NEEDS WITH STUDENT COMPANIONS. The high school and university students take on the responsibility for the care of camp participants, supported by a team of dedicated teaching and medical staff. A Year 11 companion’s daily responsibilities, depending on the individual needs of each camper, may include emotional support, feeding, dressing, assisting staff in the delivery of medications, support during recreational activities, help with mobility etc. There are also assistant companions to give support and breaks to the companions. The job of the teaching and medical staff is to make sure that everything runs to plan and to provide support, guidance and assistance. The camp is completely free of charge and goes for three days and two nights with participants taking part in an action-packed agenda of swimming, sport, arts and crafts, music, movies and much more. Charlotte, the daughter of Source Kids’ founder Emma, was lucky enough to attend one of these camps in Launceston late last year run by Launceston Church Grammar School students and staff. She had an incredible time taking part in experiences such as swimming, dancing, craft, bowling and the highlight was hooning around camp in the golf cart. Not only that, while Charlotte was at camp her mum and dad got to spend some important one on one time with her brother. Emma says “Sony Camp was such a great experience for Charlotte, it was a great opportunity for her to make some new friends, experience so many fun activities and be independent away from us for a change, we were so grateful to the wonderful LCGS students and staff for making this such a memorable weekend“. The Children’s Holiday Camp program began in 1999 with one camp in a Sydney school. Since then, it has expanded to 26 camps in 46 schools and four universities. The most remarkable element of the program is the far-reaching effect it has on the student companions, staff, younger pupils, parent volunteers, families of the children with special needs and of course, the children themselves. According to Sony, the majority of people involved in the camps go on to be advocates for the program through fundraising, awareness, new program development or volunteering. Places on the camps are offered to local schools who nominate potential campers. Children who are home schooled can complete an expression of interest form. For more information go to www.sonyfoundation.org

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Goal oriented, quality outdoor activities and camps for people with disabilities

• Single day and multi-day camp programs for children and adults with a disability. • NDIS Programs for people who require support ratios of 1:1, 1:2 and 1:3+ • Our goal focused programs are all about fun, trying new things, personal development, social connection and enjoying the great outdoors. Contact us for advice on completing your NDIS plan – we can help you or your camper prepare, so that your plan includes the important benefits derived from our camp program.

People Outdoors, a branch of the Australian Camps Association, was established in 1989 to provide outdoor recreation for people of all ages with physical or intellectual disabilities. The Australian Camps Association is a registered NDIS service provider certified with the Department of Health and Human Services (DHHS) and accredited with the Australian Tourism Accreditation Program (ATAP).

Melbourne, Victoria • P: 03 9863 6824 www.peopleoutdoors.org.au PeopleOutdoors

Trial a Wizzybug with Yooralla’s On the Move Program Thanks to the William Buckland Foundation, Yooralla has a fleet of Wizzybugs available for families to loan on a short-term basis – at no cost. The Wizzybug is a powered wheelchair designed for children under five living with physical disability. Find out more at www.yooralla.com.au/onthemove

K Sport for children with physical disABILITY

Therapy for Children Independent Kids is group of experienced occupational therapists offering services to children and young adults. We are registered to provide services through NDIS, FaHCSIA and Medicare.

2 Castray Esplanade, Battery Point, TAS, 7004 03 6234 5333 ! independentkidsOT

Providing active treatment programs for the newborn to 18 years old Treatment provided to children with neurological conditions, developmental and delayed gross motor issues. Physiotherapy also provided for general paediatric conditions; plagiocephaly, toe walking, in toeing, postural concerns.

Ph. 03 9372 0536 M. 0412 880 528

admin@paediatricphysiotherapycentre.com www.paediatricphysiotherapycentre.com

GET SOCIAL WITH SOURCE Follow us on social media – Facebook, Instagram, Pinterest, YouTube – you name it, we’re there.

COME AND GET SOCIAL WITH US!

• Camp ABILITY • Boccia • Wheelchair Basketball • Wheelchair Aussie Rules • Wheelchair Tennis • Table Tennis • Archery

Phone: 03 6272 7513

Email: sports@pdstasmania.org

Looking for a dentist for your child? Providing specialist care for your child in a caring environment.

!$% Providing assessment of and therapy to children aged 2-18 years Individual Therapy programs for children with Hearing Loss; Speech and/or Language Delay; Dyspraxia/CAS; Stuttering; CAPD; Down Syndrome; Autism; Literacy Difficulties Group Programs: The Hanen program; Early Literacy Groups & Social Skills Groups.

Ph 0432 096 310 info@essentialspeech.com.au www.essentialspeech.com.au Tasma House, 300 Ascot Vale Road Moonee Ponds Victoria 3039

AUTUMN 2018

Specialising in custom built wheelchair accessible Caravans Dr Evelyn Yeung B.D.S., D.Clin.Dent. (Paeds.) Our Caravans are designed to specifically suit our client’s needs.

We make your travel dreams come true! Factory 1/11 Simcock Street, Somerville VIC 3912

Phone: (03)5977 8194 • Ellen: 0433 131 238 • Chris: 0429 167 103 Monday – Thursday 9-5, Friday 9-4, Saturdays by appointment

181 Balcombe Road, Beaumaris Ph. 9583 1378

reception@happysmilesforkids.com.au HSKsMrMiso

hsfk_mrmiso

www.happysmilesforkids.com.au

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Does your child need help with communication? Come along to a free workshop led by experienced speech pathologists from Scope, a leading provider of therapy services for young children. The workshops are suitable for parents of children with complex communication needs, and teachers and therapists who support them. You’ll be able to understand the different communication aids available and how they can be included in your NDIS plan. Communication aids can help children: get their message across, learn new skills, follow instructions, learn routines, reduce anxiety and challenging behaviour.

Free one-on-one consultations with a speech pathologist also available to provide more individualised information

2018 WORKSHOPS Workshops are running in your local area throughout Melbourne and Victoria in 2018.

Bookings are essential For dates and locations, visit www.scopeaust.org.au or contact Scope’s Communication & Inclusion Resource Centre on 03 9843 2000 or circ@scopeaust.org.au.

Parent & Baby Creative Dance Program Come and enjoy new sounds and patterns with your baby. Grow together through the language of DANCE!

Location: Anglesea YMCA Camp Age group: 8-17 years Date: Camps available in April and May Enjoy a range of activities including high ropes, surfing, disco’s, archery, cooking and more • Meet new people • Learn new skills • Have fun

JOIN US FOR THE ADVENTURE OF A LIFETIME

See improvements in: Parent and baby connection, attunement and bonding. Balance, coordination, energy and general fitness. Creativity, self expression and sense of joy in movement.

Discos

Birthday Parties

9 Moore St. Moonee Ponds dance@creativelc.com.au • (03) 93757239 • www.creativelc.com.au

Physiotherapy to empower children with a disability or delay to reach their potential

Face Painting

Balloon Twisting

Stage shows

Get in touch to find out more: (03) 8397 3111 ymcaescapes@ymca.org.au victoria.ymca.org.au/escapes @YMCAEscapes

0410 426 342 info@kidspt.com.au ! @kidsptvic

PROVIDIN THERAP G ALL OVE Y MELBOU R RNE

Classes

SASH Entertainment provides innovative, tailored & unique entertainment suitable for children with ALL developmental levels & physical capabilities. Add a splash of

www.kidspt.com.au

SASH to your child's event!

Assisting children to develop the skills and confidence they need to reach their true potential We support children and families who are living with disabilities. We have an NDIS Coordinator who can assist you with your NDIS queries and support you through the pathways. Please contact us for further information. Eastern Shore Children’s Therapy Centre Shop 3, Bellerive Quay Building (Ground Level), 31 Cambridge Rd, Bellerive. Ph. 6245 9232

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Are the most precious things in your life secure?

Your one stop provider of continence therapy including: ● assessments ● product recommendations ● bladder and bowel support ● management and support

Preparing a Will and an estate plan will help protect your family for life’s inevitable changes. We understand estate matters and the needs of families with a special needs child. We ask the right questions so you can make the best possible plan for your estate and your family circumstances.

Helping families navigate the NDIS maze.

To make an appointment call 1800 068 784 or go to www.publictrustee.tas.gov.au

spectrumclarity.com.au

Registered NDIS provider

www.conquip.net.au 03 9876 3374

CHILD FOCUSED, FAMILY CENTRED, AUTISM SERVICES Our aim is to help you access funding and put the best supports and services in place for your child.

ADVERTISE YOUR BUSINESS HERE! Call Kelly on 0499 017 354 or email kelly@sourcekids.com.au www.sourcekids.com.au

Everyday Learning and Therapy TM

Talk to Noah’s Ark about therapy and education for your child under the NDIS. Our specialists, with professional backgrounds in speech pathology, occupational therapy, education, physiotherapy, psychology and social work, are known as Key Workers and will come to you. We also offer the following services for children with a disability or additional needs:

✔ Getting ready for Child Care, Preschool or School Supporting Inclusion ✔ Parent Connection and Support ✔ Parent Education ✔ Speaking and Listening

✔ ✔ ✔ ✔ ✔

Playing Together Supporting Positive Behaviour Coordination of Supports Everyday skills Home modifications and assistive technology

We’re here to help. Call 1800 819 140. www.noahsarkinc.org.au

Building better futures for children with disabilities

Registered NDIS Provider

APPS TO HELP WITH SENSORY PROCESSING AND SELF-REGULATION

1. FLUIDITY This app has a very responsive screen allowing users to control fluid flow and produce stunning colours at the tips of their fingers. A great tool for teaching cause and effect and increasing visual attention.

2. BRAINWORKS BrainWorks provides kids with the sensory breaks they need to function at their best! Occupational therapists and other specialists often recommend “sensory diets” to children with sensory processing disorders, Autism Spectrum Disorders, ADHD, ADD, learning disabilities, and typically developing kids who struggle with certain forms of sensory input. BrainWorks takes the guesswork out of what activities will be the most helpful to each child and allows parents and teachers an easy way to provide much-needed sensory breaks! The BrainWorks app comes fully loaded with over 130 sensory activities and more are being created on a regular basis.

5. CAUSE AND EFFECT SENSORY LIGHT BOX Light Box uses abstract animation and sound to introduce basic touch skills and awareness. This app naturally encourages exploration of touch gestures through 24 scenes which range from calm and immersive to loud and energetic. Numerous options are provided to customise visuals and simplify controls.

6. RELAX MELODIES This is a sleep sounds, white noise app but it can also be used in many other situations especially with children who need instrumental music to help with regulation. There are 52 sounds and melodies (river, ocean, wind, rain and more) that can be played together or individually.

3. POCKET PONDS A relaxing sensory Koi pond with fish that interact with a minimal touch to the screen. Make ripples in the water and feed the fish for a relaxing, zen-like experience. You can create your own experience by breeding new, rare Koi and decorating your pond to make it beautiful. Visit other ponds to experience new ambiences and get ideas.

7. MIRACLE MODUS Created by someone with autism this app does nothing more than provide wonderfully calming music and a lovely rainbow of colours. The creator of the app states “I'm autistic, and I wrote this because I wanted something to mitigate sensory overload. I find mathematically-patterned rainbow lights very soothing. After I showed it to a couple of friends and they had similar experiences, I decided to publish it.”

4. DROPOPHONE This app allows you to create your own minimalist melodies that sound like drips and drops falling on a tiny orchestra of instruments. Pressing the multi-coloured raindrops triggers notes that loop every six seconds. Combine different coloured drops and notes to compose your own rainy-day melodic backdrops. A metronome is also included to help you keep time. This app is super simple on purpose. Simple is magic!

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Start planning today to protect them tomorrow As a parent of a child with special needs itâ&#x20AC;&#x2122;s important to consider what might happen to them when you and your partner are no longer around. State Trustees can support you to safeguard the future of your child. Call us today on 9667 6444 or 1300 138 672 (outside Melbourne) about how we can help with our will writing and trustee services.

www.statetrustees.com.au

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Planning for your

child’s future A major concern for any parent raising a child with special needs is who will support their child when they are no longer around or no longer able to provide love and care for them. It’s not a topic anyone likes to dwell on, but the stark truth is, none of us are going to be around forever and if your child is dependent on others, plans do need to be put in place to ensure their continued health and wellbeing throughout their entire life. The more informed you are, and the earlier you start looking into your options, the better off your plan will be. Instead of feeling overwhelmed, it’s important to look at this as a positive step – one that will help put your mind at ease regarding the future of your child. So what can you do?

STEP 1: CREATE A VISION FOR THE BEST POSSIBLE FUTURE FOR YOUR CHILD A formal vision of care can bring some clarity to your hopes for your child and can also address the practical elements of their day to day needs. You can replace the worry and fear of the future with certainty and hope by getting all your thoughts down on paper – something concrete that you (or others in your absence) can refer to. This document can be updated as your child grows and develops and their needs change. The more clarity and detail in the planning, the easier it will be for others to continue on with the plan. Here are some questions to get you started: •

What are the hopes and dreams you have for your child’s future?

•

What is the best environment for your growing child?

BY NATALIE ROBERTS an organisation such as State Trustees (www.statetrustees.com.au). WRITE A WILL

•

How can they best communicate their needs?

•

What brings your child happiness? What do they love?

A will clarifies what will be done with your assets after you pass away. If you have a Trust set up for your child your will can ensure that your assets are transferred to this and not directly to your child. In your will you can also specify a Guardian who will take care of your child. It’s highly recommended to seek professional support when setting up these types of legal documents.

•

What safety requirements and other care elements are needed day to day?

NAME A GUARDIAN

•

What is the best place for education?

•

Who are the closest people in your child’s life?

•

Make a list of family members or friends who can make decisions on behalf of your child.

•

What community supports can help?

STEP 2: GET FUTURE FINANCES IN ORDER Addressing the financial element of your child’s future care is one of the most practical and important steps you can take. The sooner you look at your options in this area, the better. Some things to consider include: CREATE A SPECIAL DISABILITY TRUST

A Guardian is the person who will care for your child when you are no longer able to. A lot of consideration needs to go into your decision and you need to ensure that the person you nominate is aware of your decision and their obligations as Guardian. Often, a sibling or another younger relative is asked to fulfil this role but it can be any one you choose. It is also important to appoint a backup Guardian in case your first choice is unable to care for your child. Once again a legal representative will assist in the documentation required. NAME A TRUSTEE A Trustee is the person who will be responsible for managing the Special Disability Trust after your death. It can be a family member, a friend, an independent professional trustee, or even a bank or lawyer.

This is an important part of your child's longterm financial plan. This type of Trust was introduced by the Federal Government in 2006 and is part of Australia's social security framework.

STEP 3: LIVING ARRANGEMENTS

A Special Disability Trust (SDT) allows parents and immediate family members to plan for current and future needs of a person with a severe disability. The trust can pay for reasonable care, accommodation and other discretionary needs of the beneficiary during their lifetime. There are very specific rules and criteria governing the Trusts – more information can be found on the Department of Social Services website at https://www.dss.gov.au/disability-and-carers/ programs-services/special-disability-trusts

This will vary considerably depending on the level of independence of each child, as well as family supports that are in place. It’s important to link in with local community services, and research the options available for community care facilities.

Alternatively, you can seek legal advice from

It’s important to consider what the best living environment for your child would be. Where would they thrive? Who would they live with? What are all the options available?

It’s only natural to feel overwhelmed when you think of your child’s future when you are no longer in it. However, embarking on a positive plan for your child now will ensure they have every opportunity to live a happy and inclusive life. For more information: Department of Human Services www.humanservices.gov.au Department of Social Services www.dss.gov.au/disability-and-carers State Trustees www.statetrustees.com.au Intellectual Disability Rights Service www.idrs.org.au Wills & Power of Attorney www.australia.gov.au/information-and-services/ family-and-community/wills-and-powers-ofattorney Legal Aid in Australia www.australia.gov.au/information-and-services/ public-safety-and-law/legal-aid Australian Guardianship Law www.austguardianshiplaw.org

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AUTUMN 2018

What is a Special Disability Trust? The Special Disability Trust is a Federal Government initiative aimed at helping immediate family members and guardians provide for the future of family members with a disability. A Special Disability Trust can be established via a Will, or can be established by living family members to benefit their disabled relative.

WHO QUALIFIES FOR A SPECIAL DISABILITY TRUST? An individual with a severe disability (e.g. severe physical, intellectual, psychiatric or behavioural disability or medical condition) who meets certain Centrelink or Veteran’s Affairs qualifications will qualify as beneficiary of a Special Disability Trust.

WHO CAN DONATE TO THE TRUST? Anyone can donate to a Special Disability Trust. Immediate family members who contribute can be eligible for Centrelink/ Veterans Affairs means tests concessions or gifting rule exemptions. In certain circumstances the beneficiary themselves may be able to contribute, for example if they receive an inheritance. There is no limit on the value of assets a Special Disability Trust may receive. Contributions of up to the first $500,000 value can attract gifting rule exemptions on behalf of eligible donors.

WHAT ASSETS CAN BE PART OF THE TRUST? Any assets producing income e.g. cash, shares, managed funds, rental property, or any assets that provide care and accommodation e.g. house or unit, modified vehicle, wheelchair, can be donated to the trust. Donations or contributions must be unconditional during the course of the trust, but when the trust ends, any remaining funds or assets are then returned to the

THE SPECIAL DISABILITY TRUST IS A FEDERAL GOVERNMENT INITIATIVE AIMED AT HELPING IMMEDIATE FAMILY MEMBERS AND GUARDIANS PROVIDE FOR THE FUTURE OF FAMILY MEMBERS WITH A DISABILITY. donors or in accordance with instructions they nominate.

HOW ARE THE TRUST ASSETS ASSESSED IN RELATION TO THE BENEFICIARY? The funds or assets contributed to a Special Disability Trust receive generous means test concessions for the beneficiary. A concessional amount (indexed each year on 1 July) plus the beneficiary’s principal residence (if it is an asset of the trust) will be exempt when calculating the beneficiary’s income support payments/pension. Any amounts that are part of the trust in excess of the concessional amount will be assessed for income support payments/pension.

WHO CAN BE A TRUSTEE? Parents, siblings or friends of the beneficiary who are over 18 years of age and an Australian resident can be a trustee. You may also like to appoint a professional trustee company, or a corporation that specialises in legal, accounting or financial planning.

HOW LONG CAN THE TRUST OPERATE? A Special Disability Trust will only exist for the beneficiary’s lifetime. However, the trust may cease to operate if the assets and income are depleted or the trust no longer meets the qualifying criteria. Article written by State Trustees www.statetrustees.com.au

Disability Law Queensland offers free legal workshops about safeguarding the future of your loved one Disability Law Queensland (DLQ) are the experts in preparing wills and setting up trusts for the benefit of people with disability. DLQ is Queensland’s only non-profit law firm that assists people with disability and their families to plan for the future, assert their rights and access justice.

Visit www.dlq.org.au for details.

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AUTUMN 2018

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AUTUMN 2018

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AUTUMN 2018

BY JULIE JONES

A guide to travel insurance when you have a child with a disability When it comes to booking a holiday, travel insurance is often an afterthought. Let’s face it, glossy travel brochures are far more enticing than the fine print of insurance policies. However, there are several reasons why travel insurance needs to be a priority when booking a trip, especially if you have a family member with a disability or special needs. Here’s why travel insurance* should be top-of-mind.

EXISTING MEDICAL CONDITIONS If a family member has an existing medical condition you should enquire about travel insurance cover before booking your trip. Not all conditions can be covered by travel insurance and to travel without cover is risky and can be costly. Medical treatment in countries like the US is exorbitant. And if you are travelling to a country where the health care facilities aren’t as good as Australia’s, you need to have insurance so you can be evacuated to the best nearby hospital.

It’s easy to check if you can cover existing medical conditions with an obligation free quote with your chosen insurer. As soon as you’ve decided on a destination, obtain a quote online making sure to disclose all conditions plus list any disabilities, for example cerebral palsy. If you want to insure a wheelchair or walking frame you will need to list the cost of the equipment. Getting a quote before paying for non-refundable airline tickets or accommodation will provide reassurance that you can get cover and it will also help you budget travel insurance into your travel costs. Existing medical conditions often attract an additional premium. If you are declined cover on an existing medical condition, you can ask for a review. You may be asked to provide medical reports or documentation to support your case. If, after asking for a review, you are still unable to get insurance cover, look at changing your destination. Due to the high cost of medical intervention in the US you may find cover is denied for that country, but you may be approved for cover for travel to Europe or Asia.

DOMESTIC TRAVEL Travelling within Australia comes with some comfort because Medicare will pick up the bill for hospital care but there are some expenses, which won’t be covered. Our family discovered this when our son was admitted to Alice Springs hospital on a trip to the Northern Territory. Although Medicare covered the cost of his hospital treatment it didn’t cover the $600 charge from the airline for changing our flights, the additional nights accommodation needed for the rest of the family and the loss of prebooked arrangements. At the time our main concern was our son’s recovery but there were significant costs associated with his hospitalisation. Some destinations are more costly than others and the remote location of the Northern Territory makes it one where travel insurance is worthwhile.

ANNUAL POLICY If you have a few trips planned within a year, it’s worth doing the price comparison between a single trip policy and an annual policy. It can save time and money.

IF A FAMILY MEMBER HAS AN EXISTING MEDICAL CONDITION YOU SHOULD ENQUIRE ABOUT TRAVEL INSURANCE COVER BEFORE BOOKING YOUR TRIP.

AUTUMN 2018

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JULIE'S TRAVEL TIPS •

If the worst should happen when you are travelling, it’s always good to be prepared and know what you’ll need to submit a claim with your insurer.

•

When seeking medical treatment, get a medical report or letter from the doctor and keep all receipts.

•

If your travel is interrupted by a hospitalisation or illness, and there are costs involved, you’ll need to have a letter from a doctor stating you were medically unfit to travel. Keep all receipts from airline changes, additional accommodation costs and cancelled tours.

•

If you are a victim of crime and have a bag snatched or items stolen, and you submit a claim to your insurer, you will need to provide a police report or police event number with your claim.

•

I recommend choosing an insurer who offers medical consultants via phone 24 hours a day 7 days a week. If you need assistance while travelling they will guide you to the best medical facilities, monitor your situation and arrange a medical evacuation if deemed necessary.

•

We all hope for an ideal holiday where insurance isn’t needed, but the reality is, some of us will need it, and it’s reassuring to have good care.

* The opinions and experiences outlined in this story are a guide only. Source Kids recommends you research your travel insurance and the inclusions carefully. Julie shares her family’s travels, tips and experiences at the popular blog Have Wheelchair Will Travel - havewheelchairwilltravel.net.

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BY RACHEL WILLIAMS

SPECIAL OLYMPICS ADELAIDE 2018 ATHLETE PROFILE (written by participant and unedited)

THOUSANDS OF HOURS OF PREPARATION WILL PROUDLY BE PUT ON SHOW WHEN THE SPECIAL OLYMPICS IS HELD IN ADELAIDE IN APRIL. People with an intellectual disability will take centre stage when the event, held every four years, takes place at Titanium Security Arena from April 16-20. It’s the 11th National Games and fittingly there are 11 sports being showcased – athletics, basketball, bocce, bowling (tenpin), equestrian, football (soccer),

golf, gymnastics, sailing, swimming and tennis. AFL football will also be held as a demonstration. The Special Olympics was first held as a National Games in Launceston, Tasmania in 1986 where 200 athletes from Australia and New Zealand competed in aquatics, athletics, football (indoor soccer) and gymnastics. The event has grown significantly over the years and the Special Olympics’ website says it best when it conveys what the event means to to the 1000 athletes from across the country who will compete: “For athletes it’s the culmination of years

SAMANTHA BRADFIELD AGE: 19 DISABILITY: Global developmental delay with a severe language disorder.

SPORTS Athletics, Swimming, Basketball.

IS THIS YOUR FIRST SPECIAL OLYMPICS NATIONAL GAMES? Yes, although I have competed at New Zealand in the Trans Tasman games in 2016.

WHY DO YOU TAKE PART? Make friends, develop my confidence, I enjoy sport.

HOW MUCH PREPARATION HAS GONE INTO TAKING PART? Train weekly in athletics, fortnightly in swimming.

ALMOST 600,000 PEOPLE IN AUSTRALIA HAVE AN INTELLECTUAL DISABILITY AND THE SPECIAL OLYMPICS IS DESIGNED FOR THOSE WHO WANT TO MEET NEW PEOPLE, CELEBRATE THEIR ABILITIES RATHER THAN THEIR DISABILITIES AND BE INVOLVED WITH SPORT. www.sourcekids.com.au

WHAT ARE YOUR EXPECTATIONS ABOUT THE EVENT? I will be competing in athletics in the 100m run, 400m run, shot-put and relay. I think my best event will be 100m. I won gold in the 100 in New Zealand.

WHAT ARE YOUR LONG TERM GOALS? To help other kids with a disability learn to play sports and encourage others to join Special Olympics. I will be taking part in a certificate in Work (Sport) at Victoria University at Footscray this year and I hope it will help me achieve these goals.

AUTUMN 2018

ATHLETE PROFILE (written by participant and unedited)

JYE NAI-SMITH AGE: 17

DISABILITY: of regular and dedicated training. For families it inspires hope for a future. For volunteers it provides a joyous outlet for their generosity. For media and supporters it celebrates achievement over adversity. For sponsors it showcases corporate social responsibility and diversity strategies to engaged and potentially new audiences.” Competitors had to qualify at state events to make the team. 19-year-old Samatha Bradfield is just one of the Australian team members getting ready for gold. She competes in athletics, swimming and basketball and says her 100m running race will be her favourite – after all, it is the event she claimed a gold medal in at the Trans Tasman Games in New Zealand in 2016. For Joe Nai-Smith, his participation in the swimming events will have a focus on simply doing his best. It’s the mix of participants that makes organising the event a joy for those on the leadership team. Jehad Rasheed, Special Olympics Australia 11th National Games Chairman, said it was thrilling to be involved.

“(It’s) our flagship platform to showcase the abilities of our Special Olympics athletes. The National Games is more than just a competition. The social and emotional impact is unlike any other sporting event and it enriches the lives of everyone involved,” Jehad said.

cognitive disorder, autistic spectrum disorder, low vision, fas scoloritis schermans desisc absence seizures

SPORTS: swimming

That feeling is echoed by Kim Hurem, the Special Olympics’ Families and Supporters Program Manager.

IS THIS YOUR FIRST SPECIAL OLYMPICS/HOW MANY HAVE YOU COMPETED IN?

“Being involved with the Special Olympics National Games is an incredibly rewarding experience,” Kim says.

“Witnessing first hand the pride and joy in both the athletes and supporters throughout the Games is a constant reminder of the impact Special Olympics and sport makes to so many lives.” And, as the father of the Olympic movement, Pierre de Coubertin, said: “The most important thing in the Olympic Games is not winning but taking part; the essential thing in life is not conquering but fighting well.” It’s a message that will resonate well with the Special Olympics participants when they stand tall and proud at the official Opening Ceremony before the games begin.

WHY DO YOU TAKE PART? I enjoy playing sport

HOW MUCH PREPARATION HAS GONE INTO TAKING PART? I train twice a week

WHAT ARE YOUR EXPECTATIONS ABOUT THE EVENT? To do my best

WHAT ARE YOUR LONG TERM GOALS? To work with animals

“WITNESSING FIRST HAND THE PRIDE AND JOY IN BOTH THE ATHLETES AND SUPPORTERS THROUGHOUT THE GAMES IS A CONSTANT REMINDER OF THE IMPACT SPECIAL OLYMPICS AND SPORT MAKES TO SO MANY LIVES.”

AUTUMN 2018

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Few sporting events can match the social and emotional impact of the Special Olympics Australia National Games. This April, over 1,000 athletes with an intellectual disability from all over Australia will demonstrate their skills and abilities by competing in 11 sports at the National Games in Adelaide from 16 - 20 April. The competition is a transformative platform to challenge attitudes, educate and foster wider acceptance in the community about intellectual disability.

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AUTUMN 2018

WHAT DO I DO WHEN…

BY ARIELLA LEW

My child is dependent on co-sleeping? According to worldwide statistics, the number of parents who report that they co-sleep for at least part of the night is rising. In order for co-sleeping to work, however, everyone involved has to be able to actually sleep and function. If having a child in your bed results in you or your partner taking up residence on the couch or if your children all decamp to your bed in the middle of your night but there is no room for you, it may be something that needs rethinking. Many parents may not consider the strain that long term co-sleeping can put on their relationship. If you are co-sleeping, remember the importance of time together as a couple, date nights and getting away from it all even if it is just for a glass of wine in your garden! If co-sleeping is something that works for your family, the most important thing to ensure is that everyone is safe and actually able to get a good night’s rest. For some co-sleeping parents this happens nightly, some occasionally and some never. Here are some practical things to think about if your child sleeps with you and what to do if you want or need to transition them to their own bed or bedroom.

WHY DID IT START IN THE FIRST PLACE?

the night due to processing issues, anxiety, bedwetting or hormonal imbalances. Each of these problems (and many others) have possible solutions.

WEANING YOUR CHILD OFF CO-SLEEPING

Some of you may not remember life without a little person in your bed! But if you can, try to recall how co-sleeping started in the first place. It may have been an unsettled newborn that was easier to keep close. Perhaps your child has an underlying anxiety and is unable to self-settle. It could be that the risk of seizures, sleep walking or sleep apnea mean you would rather keep your child close. Many children with additional needs are actually unable to sleep through

For children with special needs, a change in sleeping arrangements should be introduced gradually. There are several ways to do this depending on your child’s age and ability. You may consider a social story that explains to your child your expectation that they are going to sleep in their own bed and gives them a guide for what to do if they wake up in the night.

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Options may include a mattress on your floor that they can come to or starting the night in their own bed but allowing them to come to you if they wake later. If their mobility doesn’t allow that, think about how close their room is to you and whether you can go to them to settle them back to sleep. Your night may still be disrupted but your child loses their dependence on having you there throughout the night. Make their room a place that they want to sleep – buy new bed sheets that are themed with their favourite characters and allow them to choose the toys they want in their beds. Reward charts can also work well and can be used for number of hours in their own bed, going to sleep without you or made specific to the challenge for that child.

FEELING COMFORTABLE WITH YOUR DECISION TO CO-SLEEP OR NOT If you started co–sleeping due to a concern with your child, you may feel there is no alternative. I would recommend looking into seizure alarms/ apnea monitors/bedwetting alarms, which will wake you if there is a problem. If you are concerned about your child’s anxiety, think about their bedtime routine and the time between school and bed. Do they need time to process their day? Do they have a worry box that you can use with them before they go to sleep? Are they overstimulated just before bedtime? Do they know they can sleep in your room on a mattress if they wake or that you will come to them and resettle them?

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Ultimately, if your child feels safe, they will likely sleep better. This means working out what they need in the bedroom environment to make that happen. You may be representing the sensory input they need; you may be their security blanket or they may just be responding to habit. Any of these can be replicated without your physical presence being required all night long. Every family is unique and the decision to co-sleep or not is yours. Educate yourself by researching the pros and cons and then make the decision that works for your situation. Ariella Lew, Bsc (Paediatric Nursing) is the founder of Kids on Track Consultancy in Melbourne www.kidsontrackconsultancy.com

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AUTUMN 2018

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Creating a lifetime of opportunities for children with autism AEIOU Foundation provides autism-specific early intervention to children aged 2 - 6 years. Our evidence-based program develops essential life skills, while providing family and transition support. We also assist families with access to the NDIS. To find your nearest centre, visit www.aeiou.org.au or call 1300 273 435

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CELEBRATING 40 YEARS

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BY KYLIE MARTIN

Learning language

with lego LEGO IS A GREAT ACTIVITY FOR BUILDING SPEECH, LANGUAGE AND SOCIAL-SKILLS

This past Christmas, I was lucky enough to take a holiday to the good old US of A and found myself in an Orlando theme park, surrounded by children and lots and lots of Lego. Lego has been a part of Australian childhoods for many, many years now, with the first catalogue being released in Australia in 1962. Almost every home would have at least one mega tub full of blocks, little heads and bodies and wheels, and who hasn't experienced the pain of standing on one of those pieces in the middle of the night! When we think of Lego as a play activity we rightly, might think of it as an activity of

creativity, good for fine motor skills and early skills of engineering and design. But Lego is also a great activity for building speech, language and social-skills. Now when I say speech, language and social skills, bear in mind that I am talking about a set of skills that are as colourful and varied as the blocks lining the walls of Disney World – I could write for a whole year and still have more ideas on how you can use Lego for specific skill development (perhaps this can become a series!). So let's just start with some broad-brush strokes using Lego activities to help kids develop receptive and expressive language skills.

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Scan the QR code above to view the new Standz demonstrated by Jenx!

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AUTUMN 2018

RECEPTIVE LANGUAGE (UNDERSTANDING THE MEANING OF WORDS AND HOW WORDS GO TOGETHER) Understanding is the foundation of good communication. Kids generally won't use words until they have a good understanding of the meaning of that word and the situations it relates to. For younger children, you can develop understanding of single concept ideas and following simple instructions. You might use these activities for 2-3 year olds. Find me one like this. Can you find a green block? Where is a big block? I need a boy. Let's look for a wheel. Then you can try more complicated instructions. These are good for 3-4 year olds: We need one that is red and has 4 bumps. I'm looking for wheels that are not red. Can you get me two of these big blue blocks. Find a blue square and a red square. For older children try asking questions that require more thinking and planning: What would we need first to build a truck? What would be our next step? What would happen if I swapped this for that?

Where did I go wrong with this? You could also try giving a series of instructions and seeing if your child can recall and follow them, telling stories with the objects you make and asking your child to retell the story or tell them how you made your object (but miss out a step) and see if they can work out what you forgot.

EXPRESSIVE LANGUAGE (USING WORDS AND KNOWING HOW TO PUT WORDS TOGETHER TO EXPRESS IDEAS) Children generally learn through interest, so when it comes to Lego, before you jump in and ask a hundred questions that they need to find answers for, stop and watch what they are interested in, then talk about that. Always remember the rule WAWA (watch, announce, wait, add). For younger children who might be interested in stacking and knocking, you could add commentary to what they are doing..."Up, up, up, more up, more up....... down! Crash!" Then quickly scoop all the blocks to you and offer your child one block and announce "Up?" Then wait for your child to respond with "Up!" (Don't forget, it can take up to four seconds for our children to think, plan and say so wait, wait, wait!"). Hand your child the block and say "Up block". You could do this for colour, size, actions, speed (fast, fast fast, slow) and as we know, kids can stack and knock for hours! For 3-4 year olds you could focus on:

Taking turns explaining what you are building. What you are going to add next. What you are both looking for and have a race to see who can find their part first. Giving clues about what you are making and waiting to see if the other person can guess what you are going to make. Older children might enjoy a game where you hide some blocks in a box and they have to guess what's in there by describing the blocks to you, or request a block out of the box for their construction by describing the block. You could also put a small construction inside a balloon, blow up the balloon and then hold near a light. Your child could describe the blocks they think you used, they could describe what your construction is used for (e.g. if you made a car they could say "you made something that drives on the road and takes people places") then they can pop the balloon and have the construction.

AND A QUICK WORD ON ....... SOCIAL SKILLS (THE SKILLS KIDS NEED TO USE THEIR LANGUAGE SKILLS EFFECTIVELY AND APPROPRIATELY WITH OTHER PEOPLE) Children often find it difficult to multi-task if one of the tasks is a bit tricky. If they have trouble with fine motor skills or planning or even communication, they may prefer just to sit and build in silence. That is not your cue to leave. Sit with them, build next to them, comment as you build and ask for help when you need it. You are modelling social skills of shared interest, personal space awareness, turn-taking attention, problem solving and how to use language in play. The amount of noise, chatter and laughter in the theme park I went to, tells me without doubt that Lego is a good activity for building communication skills. I hope you can get busy making your own and learning in the process! Kylie Martin is a Speech Pathologist at Chatterboxes Speech Pathology Services in Minyama on the Sunshine Coast. To find out more about their services call 07 5444 2451 or visit www.chatter-boxes.com.au

DISCOVERING NEW GROUNDS, TAKING OUR JOURNEY TO WHERE WE HAVE NEVER BEEN BEFORE.

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AUTUMN 2018

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BY RACHEL WILLIAMS

Norrie disease

RARE DISEASE

WHEN RADMILA KALIMNAKIS LOOKED INTO HER NEWBORN SON’S EYES SHE KNEW SOMETHING WASN’T RIGHT. It took eight weeks of concern before her worst fears were realised – precious Pedro was totally blind and would never see his mum’s adoring gaze. Pedro has the rare Norrie disease which affects just 400 people across the globe. The three-year-old also has a confirmed autism diagnosis. Radmila’s journey with her first child is still raw and confronting and brings her to tears as she recalls the moment of diagnosis and laments that in fact his condition will get a lot worse, she just doesn’t know when. “I had a normal pregnancy with normal scans and while I didn’t have an amnio it wouldn’t have picked it up anyway as it is so rare it doesn’t come up in standard testing,” Radmila explains. “He was born at 38 weeks with an elective Caesarian and was fine the first night and then he screamed every night, all night long – one hour of breastfeeding, one hour of rocking – it was exhausting. “His eyes were huge, which we later found out was glaucoma and is very painful and causes headaches so he was screaming in pain.” Despite a six-week checkup with a paediatrician suggesting he was fine, Radmila was insistent Pedro wasn’t right – he wasn’t tracking her with his eyes, and didn’t react when keys were jiggled in front of him. “His eyes just didn’t look normal and the pupils had yellow in them...something was wrong,” she recalls.

WHAT IS NORRIE DISEASE?

“I took him back to the ED at the hospital where he was born in Malvern and the fantastic doctor actually opened his eyes while he was sleeping and sent us to the Royal Children’s Hospital. “The paediatric ophthalmologist there said ‘I can’t see in so he can’t see out’ – so we knew he was blind. An ultrasound confirmed both retinas were detached. “We felt totally alone. I’d never even met a blind person and now we have a blind child. “He was diagnosed with glaucoma at this point and they gave him numerous eye drops. When we got him home he stopped

eating so back in we went and had a month in hospital with nasal gastric feeding and four rounds of laser surgery to reduce the pressure on his eyes and then a week of sleep school.” Radmila and husband Peter were distraught and began the journey of genetic testing – but were told it could take up to one year for results.

“WE HAD NO INFORMATION AND NO IDEA ABOUT WHAT WAS WRONG AND SO I ACTUALLY PUT A PHOTO OF HIM ON A (HEALTH-RELATED) FACEBOOK PAGE AND A LADY ON THERE SAID ‘SORRY, BUT HE’S GOT NORRIE DISEASE”. www.sourcekids.com.au

NORRIE DISEASE IS AN INHERITED EYE DISORDER THAT LEADS TO BLINDNESS IN MALE INFANTS AT BIRTH OR SOON AFTER BIRTH. It causes abnormal development of the retina. The irises or the entire eyeballs may shrink and deteriorate during the first months of life, and cataracts may eventually develop. Those with Norrie disease develop progressive hearing loss, and may have autistic features and developmental delays in motor skills such as sitting up and walking. Other problems may include mild to moderate intellectual disability, often with psychosis, and abnormalities that can affect circulation, breathing, digestion, excretion, or reproduction.

AUTUMN 2018

“We had no information and no idea about what was wrong and so I actually put a photo of him on a (health-related) Facebook page and a lady on there said ‘sorry, but he’s got Norrie disease”.

Pedro also has Non24 sleep condition, which means he is awake for hours each night.

A week later the tests came back and it was confirmed Pedro had the most severe case of Norrie disease.

“The sleep deprivation is the worst,” admits Radmila, who also has a one-year-old son Luca, born after an IVF pre-implantation genetic screening program to rule out the chance of another Norrie child inherited from her genes.

“It presents differently depending on why you have it and only 10 per cent of people in the world with the disease have his level of severity,” Radmila said.

“I sometimes feel like I don’t do enough for him – it’s so much work and we are exhausted with a baby and we both work too.

Pedro has also recently been diagnosed with autism and has started Applied Behavioural Therapy, which Radmila says has made an amazing difference.

“We need to train him to use a cane to walk.”

“He has gone from being non-verbal to being able to request food and drinks and preferential items, so is making incredible gains.”

BUT, RADMILA’S GREATEST FEAR IS THAT SHE KNOWS THINGS WILL DETERIORATE FURTHER IN THE FUTURE. SHE JUST DOESN’T KNOW WHEN. “My biggest fear is hearing loss, which will happen from age three onwards and that will affect his ability to echo-locate and respond to treatment.

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“It will also impact negatively on his quality of life as he loves to listen to music – it is his most favourite activity and we never leave home without an iPad or iPhone loaded with children’s nursery rhymes. “We just have to focus on the fact of what he has got now and not what the future will hold.”

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“It 100 per cent will happen and if his deafness is profound it will be difficult as he won’t be able to respond to therapy and it will put his development at a standstill.

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COMPETITION

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SOFT-TOUCH™ SITTER AND EIO STROLLER Thanks to Special Tomato and Dejay Medical we are giving away a SoftTouch™ Sitter (size 2) and EIO Stroller in the colour of your choice, valued at over $2000.

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Soft-Touch™ Sitters provide clinically sound seating and support with a very soft contoured feel. The specialised material is easy to clean, helps to hold the child’s position, is latex free and can be used with a variety of bases, on its own, strapped to a chair or in a buggy. They are lightweight and come with full pelvic and chest harnesses that are machine washable. Notools are needed to make adjustments.

SHAPEEZE PACKS Win one of two Shapeeze packs valued at $49.90 each. The Shapeeze activity packs include fun press-out, paste and colour activities to help build problem-solving, fine motor and foundation skills in readiness for school years. The kits are scissor-free and contain a glue stick, triangle-barrel pencils and a pencil sharpener. We’re giving away an A4 and A3 pack for 3-6 year olds, plus an A4 and A3 pack for 4-7 year olds.

The EIO Stroller is designed for easy use and no-tools adjustability. It comes complete with sun canopy, shopping basket, adjustable lateral pads and padded headrest, angle adjustable seat back and footwell, adjustable 8-point harness, solid 23cm front and 28cm rear wheels with front swivel wheels and a lock-out feature, plus a one-touch parking brake.

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THE CURIOUS INCIDENT OF THE DOG IN THE NIGHT-TIME PRIZE PACK Win one of three prizes including two A Reserve tickets to the National Theatre of Great Britain’s acclaimed production of The Curious Incident of the Dog in the Night-Time and a copy of its International Bestselling Book by Mark Haddon, valued at $259.99 each.

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The production and book tells the story of fifteenyear-old Christopher Boone who has an extraordinary brain, exceptional at math while ill-equipped to interpret everyday life. Tickets can be for any city on the tour in June 2018, and we’ll also be giving away copies of the book to three lucky runners-up.

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SKOOG MUSIC CUBE Win a Skoog 2.0 valued at $299.95. The Skoog 2.0 is a tactile musical instrument that anyone can play. You can jam with your favourite tracks instantly! Whether you tap it, twist it or squeeze it, this new music accessory for iPad opens up a world of music play to everyone. It’s simple, intuitive, and keeps kids engaged – while giving them the confidence to express themselves.

AUTUMN 2018

REDEFINING ABILITY FOR 50 YEARS.

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