Source Kids Summer 2018 - Victoria/Tasmania by Source Kids

ISSUE 18

SUMMER 2018

GET

organised SURVIVING SUMMER SPECIAL NEEDS ADMIN 101 NDIS PLANNING GUIDE APPS & SERVICES 2019 RESOLUTIONS

ONE-ON-ONE WITH

DYLAN ALCOTT

2019 PULL-OUT

PLANNER

PLUS...CHRISTMAS GIFT GUIDE | ACCESSIBLE BEACHES | SYNDROMES WITHOUT A NAME | TENNIS

ISSUE 18

SUMMER 2018

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e v o o l f e m h t The ONLY * paediatric oral supplement designed to taste similar to milk

! ilk

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NOW AVAILABLE IN 4 GREAT FLAVOURS:

BIG on Energy. Small on Volume.

ISSUE 18

SUMMER 2018

inside FEATURES & ARTICLES

8 One-on-one with Dylan Alcott 14 Tennis – all abilities taking to the court

PECIAL FEATURE S - GET ORGANISED!

• Special needs life admin 101

• Organising tips

• Apps + services to help

• Surviving summer

• The dos and don’ts of Christmas

• Resources for planning the perfect holiday

• 6 tips for the 6 weeks of summer

• The balancing act – work + family life

• 2019 resolutions

• Visual schedules

• OT tips to get organised and NDIS planning guide

WILLOWBUG DENIM SHORTS Just like their best selling wheelchair trousers, these wheelchair shorts from Willowbug are higher at the back to stop gaping and riding down and have a shaped, roomy seat to accommodate pads/continence aids. A soft brushed lining and an elasticated waist means these shorts are amazingly comfortable. Available in soft black, grey, navy jersey and stretch denim. www.willowbug.co.uk

REMEDY HYDRAGUARD 42 Christmas gift ideas – for children, parents and teachers 48 School transitions – how to prepare your child 56

Accessible beaches

Syndromes without a Name

Remedy Hydraguard has a silicone-rich formulation creating a breathable, water-resistant film over skin as it moisturises and nourishes. It is appropriate for perineal care since it forms a water-resistant film over the skin and reduces the appearance of red, cracked and scaly skin while soothing dry, itchy skin. Rich in oleosomes it is gentle enough for use on the most fragile skin. www.medline.com/au

REGULARS 4

We Love

Welcome

What's on calendar

Pull-out 2019 planner

2019 key dates

Bed product review

Family profile – the Tucker family

Cooper's travels

Competition corner

FIRST-THEN SCHEDULE First-Then visual schedule is a user-friendly mobile app by Good Karma apps designed for caregivers to provide positive behaviour support for individuals with communication needs, developmental delays, autism spectrum disorders or anyone who would benefit from a structured environment. Available from the App Store.

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we love

HART POOL CREATURES This colourful set of six animals sink to the bottom of the pool for fun underwater retrieval games! www.hartsport.com.au

SOURCE KIDS

WE LOVE

OXO GRAPE & TOMATO CUTTER This time-saving and safety device keeps fingers out of the way while the sharp, serrated stainless steel blades quickly and easily slice grapes, pitted olives and grape tomatoes. The curved finger rests provide comfort even during repetitive use and the cover snaps on for safe storage and use on the go, plus it comes apart for easy cleaning. www.minihippo.com.au

MODIBODI TEENS RANGE Introducing RED by Modibodi. RED uses tech-savvy fabrics and breathable fibres so your female of the future can stay fierce and protected all day when it comes to her periods. Made with Modibodi's signature and patent Modifier Technology, RED is available in hipster styles, bikini and boyshort and bundle packs.

HART HEX TRAMPOLINE

www.modibodi.com Using 36 bungee cords for safety and better durability, this hexagon shaped small trampoline will easily fit into your child’s movement program at home. It is valuable as a fitness product but also a great active play product for balance and motor skills. Includes a stabilising bar for those unsteady or needing a confidence boost.

THERM-OZ THERMOSTATIC SHOWER MIXING VALVES

www.hartsport. com.au

These valves ensure a constant water temperature providing a safe option within the home. And with water efficient and cooltouch assistive technology, there are no electrics, no pipework or tiling alteration required.

KIDS GRATITUDE JOURNAL Research shows practicing gratitude increases levels of happiness as well as having a positive impact on your health and wellbeing. This journal has space for your child to enter three things each day that they are grateful for. It includes a happiness scale, prompts, self-care tips as well as beautiful hand-drawn colouring-in pages. Something as small as this could change your child’s perspective every single day…

www.therm-oz.net.au

www.lovingloudly.com.au

ISSUE 18

SUMMER 2018

welcome

TO SOURCE KIDS

I feel like I’m starting to sound like a broken record with my “where has the year gone!” comments. As we release our last issue for 2018, there are only 4 weeks until Christmas (and on a personal note just days until I welcome baby number 3 into the world) – gasp! 2018 has been a huge year here at SK headquarters – we’ve released 4 magazine issues, held our first expo with 3000 people attending, published more than 220 online articles and blogs, sent over 100 emails to our subscribers and, more recently, doubled our magazine print run.

ALL UP WE’VE REACHED OVER 3.6 MILLION PEOPLE THIS YEAR! This is a staggering figure that we are incredibly proud of, and we have you, our audience, to thank along with the many businesses that have supported what we do and have allowed us to continue to deliver relevant, reliable and up-to-date information during the year. So, what does 2019 have in store for us at Source Kids? Our events will grow to at least two expos – we’ll be heading to Melbourne on March 29-30 and to Brisbane on July 5-6 (follow our Facebook event pages for all the latest details on these), we have some exciting new content streams coming your way, we’ll be rolling out our new website making our content even easier to find and access, plus plenty more. We recently launched our reader survey and would love to know what YOU, our audience would like us to deliver – if you haven’t already had your say, jump onto our website www. sourcekids.com.au and hit the big 2018 Reader Survey button and tell us how we’re doing. With so much change and growth taking place, it seamlessly led us to our ‘Get organised!’ feature this issue. We’re forever trying to find new ways to be more organised, plan our time, prepare our kids for various routines and events, the list goes on – pardon the pun! So, head to page 16 for some great tips to start 2019 in an organised fashion. And don’t forget to pullout our 2019 planner and pop it on the wall in anticipation for the new year. We also go one-on-one with tennis superstar Dylan Alcott this issue. The super-positive disability advocate who also happens to be a completely loveable larrikin shares his experiences and advice on growing up with a disability, it’s a great read so don’t miss it. We also feature tennis for all abilities, have four full pages of Christmas gift ideas and highlight loads of accessible beaches for your family to enjoy this summer. I hope you enjoy our summer issue and I’d like to wish you and your family a very happy Christmas and a ‘super-organised’ start to 2019!

SUMMER 2018

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, Hayley Hughes, Emma Benitez, Tennille Graham, Plan Partners, Cooper Smith, Laura Tucker.

COVER

Cover photography by Luke Hemer – Tennis Australia

ADVERTISING BUSINESS DEVELOPMENT MANAGER Naomi Sirianni – 0447 755 043 naomi@sourcekids.com.au ADVERTISING Carmen Smith - 0438 847 696 carmen@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.

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 6

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we love

SOURCE KIDS

WE LOVE

WEEK PLANNER FOR KIDS This app by Novitura helps children learn the structure of the day and week through the use of recognisable icons, quickly learning to comprehend what week routines there are and what special activities might be planned. Using a set of universal icons that represent a wide range of activities it also comes with a ‘reward’ icon for good behaviour or performance. Available from the App Store.

CONNIE HANSEN

RACE RUNNING BIKE

The Connie Race Runner is a custom-built tricycle without pedals – giving anyone who cannot functionally walk or run the experience of running! Now a world Para Athletic event, race running is open to all ages from 3 to 103, including those who use a wheelchair, walker or have an unsteady gait. www.dejay.com.au

REIZEN BRAILLE LABELLER This hand-held, portable Braille labeler is excellent for labeling all sorts of things from kitchen storage right through to school equipment and personal belongings.

HARVEST COLLECTION Meet Mary and Jonathan – the mother and son duo behind the label of art prints, bags, wallets, keyrings and stationery. Mary has coupled her design background with her 10-year-old son’s neurodiverse creativity to highlight the abilities of people with disability through their art products. www.harvestcollection.com.au

www.visionaustralia.org

ISSUE 18

SUMMER 2018

ONE ON ONE FEATURE

DYLAN ALCOTT

WITH

DYLAN ALCOTT BY RACHEL WILLIAMS

HEâ&#x20AC;&#x2122;S BEEN THE CHEEKY FACE OF THE INVICTUS GAMES WHO MANAGED TO CONVINCE PRINCE HARRY TO DON A PAIR OF BUDGIE SMUGGLERS. And for Dylan Alcott, becoming an inspirational poster boy for disability inclusion is something the wheelchairusing champion is taking in his stride, pardon the pun!

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ISSUE 18

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DYLAN’S UNIQUE SENSE OF HUMOUR AND HONEST APPROACH HAS SEEN HIS STAR RISE AND SHINE BLINDINGLY BRIGHT IN RECENT MONTHS AND, IT’S BEEN A BREATH OF FRESH AIR. To understand the magnitude of Dylan’s triumphs on the world stage – both as a sportsman and now, it seems, celebrity – you have to appreciate where he has come from. When the wheelchair tennis star was born, doctors decided that at just three days old he needed surgery to remove a tumour wrapped around his spine. The operation left him a paraplegic. He struggled for years to come to terms with his physical reality. “I found it really tough growing up with my disability. I was OK, but then I got bullied at school and it became really hard,” Dylan says. “No matter how positive you try to be, as a kid especially it can really get you down. The best advice I received was to get a haircut because my hair was crap. I really took that on board and made a change! “ It was sport that actually changed his life – Dylan goes as far as to say it was a lifeline. “I don’t think I’d be doing much, if anything, now if not for sport. It saved me,” he says. At the age of 12, he discovered Paralympic sport, and at the age of 17 became the youngest wheelchair basketball gold medalist in history at the 2008 Beijing Paralympics. Two years later, he represented Australia at the 2010 IWBF World Wheelchair Basketball Championship in England and won a silver medal at the 2012 London Paralympics.

“Of the 6000 people who came, 500 of them had disabilities, and 300 of them had never been to an event of any kind before because of lack of access or understanding.

By 2016 he had swapped the basketball for the tennis racquet and went on to win two more golds at the 2016 Rio Paralympics for wheelchair tennis.

“I’ve been pretty vocal about Ability Fest truly being one of the best days of my life. Working with the teams from Untitled and Alt Shift and of course the team at DAF to pull that off was incredible.”

He has won six Grand Slams (four Australian Open singles titles and two US Open singles titles) and even graced the courts of Wimbledon this year for the first time in an exhibition doubles match. Dylan is already in training for the Australian Open in January and will then set his wheels in motion for Tokyo 2020.

Dylan is determined to share his positivity with the world – and help others who find themselves in the position he was before sport catapulted him into a world of hope and ambition.

“Training for these types of events is as much mental as it is physical – something I have learnt the hard way before,” he reveals.

His greatest passion is changing the way those with disabilities are perceived, and to inspire young people – whether they have disabilities or are able-bodied – to achieve their dreams.

“I am working hard at the moment to ensure everything off the court is in order with my team so that mentally I am ready to take on the court.”

So much so, he has written his first autobiography – able: Gold Medals, Grand Slams and Smashing Glass Ceilings.

Despite the on-court glory, it is an achievement off the court that the Order of Australia recipient lists as his greatest moment.

Dylan says the book, due for release as we go to print, is something he has wanted to do for a long time.

He established the Dylan Alcott Foundation; a charitable organisation offering mentoring, grants and scholarships to help enrich the lives of young people with disabilities through sport and study.

“The process was definitely one I wasn’t ready for – coming off the US open, I literally chained myself to my desk for weeks to get it done but boy am I glad I did,” says Dylan.

As a fundraiser he organised a music festival – no surprises there for the music loving, triple j radio announcer famous for his crowd surfing. Enter Ability Fest. “It was for anyone – no matter your race, gender, sexual orientation, abilities,” Dylan says.

“I’ve been very honest about a lot of my emotions throughout the book – extreme highs and lows – things that people might not know. “I hope people finish the book with the motivation to dream bigger and aim higher – and do it all with a joke and a smile.” And what a smile he has, this poster boy for disability sports and inclusion. “Ha – I think every guy dreams of being a poster boy, don’t they?”, he quips when I ask him about whether he was prepared for such a monumental responsibility. “But seriously – no. I just go about my day and have a lot of fun with it. There are the normal niggles that come with travelling a lot and working long hours but I honestly cannot complain – I love my job and love my life and wouldn’t change any of it. I’m very lucky to be where I am.” For a man with so much more to give on and off the court, he is happy to give this advice to people reading Source Kids. “Be confident and proud of who you are,” Dylan encourages. “Remain authentic to yourself and if one person gives you bad advice, go elsewhere. “My all-time favourite saying is, “For every one thing I can’t do, there’s 10,000 more that I can.” Genuine advice, from a genuine larrikin and legend.

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www.sourcekids.com.au

STAND UP STRIDE FORWARD THRIVE ON! ,

Australiaâ&#x20AC;&#x2122;s largest collection of medical-grade orthopaedic footwear, wearable postural support equipment for children and adults including: Sensory Dynamic Orthosis (SDO) garments, hand splints, arm/leg wraps, head/neck support collars. Paediatric Physiotherapy lead services and equipment provider. NDIS registered.

www.wellandable.com.au

Scallop

Wombat Living

Cricket

Kudu

R82 Seating

Taking you from the simple to the complex!

Stingray

Tel: 02 8213 6666

www.R82.com.au

ISSUE 18

x:panda |

SUMMER 2018

Now available in Australia Running Bikes for Recreation or Sport

Running bikes are a great way to be active and healthy. Designed for multiple activities, including basic mobility, play, family rides, sport and physical fitness. Available in 5 sizes to suit ages 3 and up, Come & try events are being held in November throughout Australia. Contact us for your local event or organise your free trial.

FLEXIBLE SEATING FOR HOME, SCHOOL AND ON THE GO Backed by a 5 year warranty

therapy@dejay.com.au or visit us online www.dejay.com.au

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

nis TALLenABILITIES

FEATURE

TENNIS

TAKING TO THE COURT

BY RACHEL WILLIAMS

IN LESS THAN TWO DECADES, THE PARTICIPATION OF PEOPLE WITH A DISABILITY IN TENNIS HAS GROWN TO MORE THAN 60,000 ACROSS THE COUNTRY. Targeted programs and a greater engagement from the disability sector has seen interest in the sport grow faster than a Sam Groth serve and this is set to continue as more elite tournaments promote inclusion. Tennis Australia’s Director of Participation, Paul Cammack, says there is a great range of programs organised for people with a disability. “Tennis welcomes people of all ages and abilities to participate in our sport, and offers a wide range of inclusive and specialist programs for players with a disability to get involved,” Paul says. “We continue to develop opportunities for players with disability as we see an increase in engagement across the country. “We aim to break down barriers and create environments where every person can feel confident to pick up a racquet and have a go, no matter what their age or ability. “Small changes in attitude on a community level can lead to huge steps in social attitudes all over the world.”

The Tennis Australia Programs available include: • Those with an intellectual disability • Those who are hard of hearing or deaf • Blind and vision impaired • Those with a physical disability that can participate in Wheelchair Tennis “All of these programs have participation pathway options from the grassroots all the way up to the elite international competition,” explains Paul. “There are many levels of inclusive programs available to suit your child.” Each state has been running programs for a number of years. “Participation programs like ANZ Tennis Hot Shots (targeting children aged 3 to 12 years) provide integrated opportunities for children with a disability. We also provide disability specific programs through clubs and coaches across the country. Wheelchair tennis has been made extremely popular in recent years thanks to the promotion it’s received as a result of champion Dylan Alcott, our super star cover guy! Wheelchair Tennis has been available and active in Australia for over 15 years and has been included in the Australian Open Summer Series for five years – becoming a crowd favourite. The game follows traditional tennis rules, with

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the only exception being that a wheelchair tennis player is allowed two bounces of the ball. You don’t need to be permanently using a wheelchair to participate. There is even a Wheelchair Loan Program offering the opportunity for both children and adults to make use of a tennis-specific sports chair for a period of three or six months, for both tennis and non-contact activities. Twenty new chairs are available for loan via state organisations. The Australian Tennis Championships for people with an intellectual impairment has run for over 18 years while the Special Olympics, held every four years, is the world’s largest sporting event for athletes with an intellectual impairment. The pathway for hearing impaired tennis begins at local club level and expands to the prestigious Deaflympics, which are also held every four years. For official championship events, criteria established by Deaf Sports Australia is enforced – meaning that participants must have a hearing loss of at least 40dB in the better ear, and that hearing aids shall be removed during competition. The threshold for international competition is 55dB in the better ear. Tennis Victoria in particular runs a comprehensive program for blind tennis players across a range of ages and categories using various types of balls including audible tennis balls and balls of different sizes and colour. “At Tennis Australia we are working with a number of partners including Sport Inclusion Australia, Deaf Sports Australia and Special Olympics Australia, to help increase awareness and continue to create www.sourcekids.com.au

more opportunities for people with disabilities to play tennis regularly at the grass roots, recreational and elite level,” Paul says. “Tennis should be an accessible sport for all and we are delighted to develop elite pathway opportunities for people with a disability.” Paul says sport is such a great environment to create social networks, celebrate equality and open up opportunities for people with disabilities. And, from little things, big things grow. Explains Paul: “Having an elite pathway and performance development opportunities has empowered tennis players with a disability to strive to represent Australia at international tournaments. It has also helped to create role models in our sport like Dylan Alcott who are helping to inspire young people with a disability to continue to strive for professionalism within tennis with the knowledge that one day they could reach their full potential at the elite level.” That’s exactly the experience of young players like Oliver Pizzey-Stratford. Oliver sustained a spinal injury at level C5/C6 through to T2 during birth. His initial outlook was very grim, with his parents being told to expect the worst – if he did live, he would need assistance to breathe and swallow. Despite almost fortnightly visits to the Royal Children’s Hospital, as well appointments with specialists including urologists, neurologists, neurosurgeons, respiratory specialists, orthopaedic surgeons, orthotics specialists, paediatricians, physiotherapists, and occupational therapists, Oliver is pushing hard for a tilt at the 2020 Paralympics. The wheelchair tennis player was a 2018 Brisbane Open Singles Semifinalist, 2018 Brisbane Open Doubles Champion, 2018 Canberra Open Doubles Champion and won a two-year National Academy Scholarship. As we go to print Oliver is preparing for the National Championships. Tennis wasn’t the first choice in sport for the 16-year-old.

SPORT IS SUCH A GREAT ENVIRONMENT TO CREATE SOCIAL NETWORKS, CELEBRATE EQUALITY AND OPEN UP OPPORTUNITIES FOR PEOPLE WITH DISABILITIES. He initially played wheelchair basketball and still coaches kids basketball, but his sporting pursuit altered course after a Tennis Australia promotion held at Rod Laver Arena. “I chose tennis because of the comradery with my friends, there’s a great group of people around me, especially in Victoria. I just love the sport, especially doubles... it makes me happy,” he says. “My first encounter with tennis was actually a promotion event for Tennis Australia at Rod Laver Arena. I thought this was pretty awesome (being) centre stage and I thought I definitely want to play this. “I played basketball before that but from that moment on it was definitely something I want to do.” Oliver is now fundraising and training for a shot at stardom. “Ultimately (my goal) is definitely representing Australia at the Paralympics but also to go round the pro-circuit – ITF and Grand Slams – so that’s definitely the goal but I love tennis for the sport and the people around it, so if that doesn’t happen, I will still continue playing tennis.” He concurs with Paul about the impact of people like Dylan on the sport. “Of course, Dylan Alcott is doing so much for the sport and disability awareness. Heath Davidson (who won the Men's Quad Doubles gold medal with Dylan at Rio) is a really nice guy who really spends a lot of time giving back to the youth, giving back to us, so he is always around with us. “They’re both really great role models and people I would like to be and look up to.” For more information on what is available in your state contact your state tennis association or visit www.tennis.com.au/play/inclusion-and-diversity

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SPECIAL FEATURE

GET ORGANISED

GET organised! Do you feel like you’re constantly chasing your tail? Three steps forward, four steps back? Always on the back foot? You’re not alone! Parenting any child is a task worthy of a Super Mum of the Year award these days, without adding on top of that a child that has additional needs and an appointment calendar to rival Anna Wintour’s.

SPECIAL NEEDS LIFE ADMIN 101 A lengthy paperwork trail is part and parcel of parenting a child with special needs; therapy reports, school assessments, diagnosis notes, specialist updates, NDIS admin, prescriptions, forms, forms and more forms – the list is never-ending. And then there are all the appointments, routines and to-do list items that lead to this aforementioned paperwork. Feeling dizzy thinking about it all? Yes, us too! So how do you prevent a full-on life admin meltdown? Create a filing system Sorry, but random piles of paperwork in different places around the house is not a filing system. A system that works for you is always going to be work in process but if you start slowly and build over time it can be a sanity saver. Consider your child’s needs and how you might need to break sections down; there might be some overlap (e.g. records for doctors and educators) and rejigging needed but eventually the right system for your child will emerge. Some of the sections to consider could be: NDIS | IEP + School evaluations/reports | Insurance | Therapy notes |Medical history + diagnosis | Home-school communication | Medications | Equipment info | Forms to fill

E IAL FEATURIF C E P S IS H T IN YOUR L E A E K A M O T IM ITH WE A IT EASIER WIP B E L T IT L A T T S AND , S JUS T IN H L U F LP RANGE OF HSETO MAKE THE SUMMERR CHECKLIST CHRISTMAS, NEW YEA ST HOLIDAYS, ACK TO SCHOOL AND JU B PLANNING, IN L A LITTLE LE A R E N E G B LIFE D, MANAGEA E IS N A G R O E MOR B L E. A N D E N J OYA

The key to an efficient filing system is also to know when to throw stuff away. Weed out duplicates and assess whether you really need to keep print outs of every email you’ve ever sent to your child’s teacher.

Create a care guide for your child This could be kept in or alongside your child’s filing system. A care guide should provide an overview of the safety requirements, care elements and medical needs they require on a daily basis. Diagrams, written notes, dosages, medication schedules, allergies, intolerances, feeding protocols and seizure action plans are just a few things you could include depending on your child and their diagnosis. Update as necessary as your child’s needs change as they develop. It’s also useful if you create a master list of people involved in your child’s care – doctors, therapists, carers, specialists and any emergency contacts. Include their addresses, contact numbers, and email addresses.

Use family planners How many schedules are you trying to juggle in your family? There are all those appointments related to your child’s health, their therapy, their education and then there are your own appointments, siblings' events and activities, family days to remember… the list goes on. Thankfully there are some awesome visual planners on the market to help you keep track and see at a glance who’s doing what, where and when.

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www.sourcekids.com.au

GET ORGANISED

MY LIFE

SPECIAL NEEDS ADMIN 101

PRODUCTS TO HELP YOU GET ORGANISED. BECAUSE WHO DOESN’T LOVE GORGEOUS STATIONERY?

Spiral-bound, ready to hang personalised family planners from Stuck on You have space for up to six family members.

There’s an app for that There are heaps of apps on the market to help with planning and scheduling too as well as other aspects of special needs family life. Check out our apps article on page 21 for more info.

stuckonyou.com.au Plan a week of healthy and delicious lunches with the Bento Box organiser. Plus, there’s a heap of inspiration included! stuckonyou.com.au

Meal planning and meal prep “What’s for dinner tonight, Mum?” Argh, the dreaded question! Planning and prepping meals ahead of time saves time and money and is a sanity saver if you’re trying to juggle work along with your family’s needs. Google 'batch cooking' for some great ideas and make use of cute meal planning stationery or meal planning apps to help plan the week ahead. If you need to save thinking time, you could allocate a meal type to a day – Monday for pasta, fish on Thursday, Mexican on Wednesday etc.

Organise shopping Grocery shopping online is a god-send for busy families, or if you don’t like the idea of paying the delivery fees then look into the click and collect service offered by some stores. Another shopping tip: buying two of non-perishable things like washing up liquid, shampoo, etc. will mean you’ll always have one in reserve.

Organise your child So much time can be saved if you help your child to be as independent as possible with small but impactful, age appropriate home chores like emptying school bags, putting shoes away etc. Make visual lists that they can use for morning and afterschool chores with to-do items they can check off.

This family planner from Bright Star Kids is the perfect size to hang on the fridge and allow you to see at glance who should be doing what and when! www.brightstarkids.com.au We love the Happy Planners available from Carefully Crafted – they’re full of readymade templates for lists, to-do items, schedules etc. Plus, they are gorgeous – proving that busy can be beautiful! carefullycrafted.com.au Iheartorganizing on Etsy is a treasure trove of organising delights that you can personalise to your own needs and then print out. The household binder ‘Everything’ Printable kits include a grand total of 29 printables covering meal planning, finances, to do lists, scheduling, notes contacts and heaps more! www.etsy.com/au/shop/ iheartorganizing

Prep in advance

If it’s just meal planning you’re after iheartorganising also has you covered!

School lunches made the night before, school bags ready for the next day, clothes chosen and laid out. Planning nirvana perhaps but if you can just do one or two things in readiness for the next day it can make the morning rush a lot smoother.

For budget options for tidying up your desk we love the teal filing range available at Kmart kmart.com.au

Make the most of waiting time If your child has a lot of appointments, a lot of your time can be spent in waiting rooms. Instead of scrolling through Instagram, put this time to good use by getting a few things done like the aforementioned online shopping, menu planning, draft important emails, work on your to-do list, pay bills – we’re sure you can think of more to add to the list!

Or how about this cute carry file from Target? target.com.au

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organising TIPS

from parents like you

I SCAN ANY MEDICAL REPORTS AND LETTERS I GET FROM MY CHILD’S TEAM WITH AN APP CALLED FASTSCANNERPRO. IT TAKES A PHOTO TO SCAN THE LETTER AND THEN YOU CAN SAVE AND EMAIL AS A PDF. - Kylee

AFTER A HOSPITAL STAY OR A WEEK OF A CHILD BEING SICK, I PACK UP LAUNDRY IN A GARBAGE BAG AND DROP IT OFF FOR A WASH, DRY, FOLD SERVICE. IT’S ABOUT $15 PER LOAD BUT IT’S A HUGE RELIEF TO COME HOME TO CLEAN FOLDED LAUNDRY. - Jennifer

I made life books for my children and keep updating them. All important documents and information are in them - it’s easy to take these to appointments and keep track that way. - Marianne

I have a dinner plan for the week up on the fridge to get it out of my head and everyone knows what we are having. When I have the plan up everyone seems to look forward to what we are having and appreciate it with less complaining! - Meetmeundertheoaktree

THE SLOW COOKER IS A VALUABLE TOOL. CHUCK EVERYTHING IN IN THE MORNING AND DINNER IS READY WHEN EVERYONE NEEDS IT. NO MESS, NO STRESS! - MOIRA

I have a big blue folder that keeps all my documents in one place and a diary. I also have a daily meds planner and a weekly board so that everyone knows what’s happening when and if one of us needs to do something else the other one can take over. - Jessica

I have a full sized planner with all mine and my child’s appointments and to-dos in it, so our whole week is there at a glance. - Fiona

Originally I used to keep everything together in a folder. Now, I ask for all paperwork and receipts to be sent via email. I then place the emails into subfolders...this way whenever I need paperwork I can access it and send anytime, anywhere. I also have backup copies on a hardrive. - Lish

I have a menu planner and shopping list which keeps my budget on check and shows me exactly what I need. I shop with Coles online and simply pick up my groceries at a specified time free of charge. - Leigh

I LIKE TO KEEP A NOTEBOOK WITH MINUTES OF MEETINGS WITH CLINICIANS, EQUIPMENT TRIALS, ANY QUESTIONS FOR CLINICIANS ETC. WHEN ENQUIRING ABOUT THINGS I LIKE TO EMAIL SO THERE’S A PAPER TRAIL TO REFER TO; PHONE CALLS ARE GOOD BUT I ALWAYS ASK FOR RESPONSES IN WRITING TOO – THEN YOU’VE ALWAYS GOT YOUR BACK COVERED.

A whiteboard in the house works wonders for my daughter. Whether it’s to write down a list of things she needs to do after school, deciding on meals to be cooked for the week or just writing down how we feel.

- Tracey

- Jacinta

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SUMMER 2018

www.sourcekids.com.au

www.ability8.com.au info@ability8.com.au www.ability8.com.au info@ability8.com.au

Ability8 provides a user-friendly platform for managing disability journey Ability8 providesyour a user-friendly platform

for managing your disability journey Ability8 is a new and personalised way to manage day-to-day disability care. The platform has been designed to allow you to store all your important information in one place, as well as manage daily-life routines, personal care, Ability8 is a new and personalised way to manage day-to-day disability care. The platform has been designed to hobbies and much more. Whether you need just a single place to store all your details, your care requirements, or allow you to store all your important information in one place, as well as manage daily-life routines, personal care, you want a complete platform to manage, schedule and pay your own casual, contractor or service provider staff, hobbies and much more. Whether you need just a single place to store all your details, your care requirements, or Ability8 is the solution. you want a complete platform to manage, schedule and pay your own casual, contractor or service provider staff, Ability8 is the solution. BASIC PLAN BASIC PLAN

◦ Great for succession planning and building a personal profile around the ◦ Great With for succession Person Disability planning (PWD). and building a personal profile around the Disability (PWD). ◦Person AllowsWith you to store and save important

information including images, videos and ◦ Allows yousuch to store andrequirements, save important documents as care information including images, videos and equipment, activities, medications and documents such as care requirements, more. equipment, activities, medications and ◦more. All in one place with the ability to

securely share with your circle of support ◦ Allthe in one the ability to via App,place printwith or email. securely share with your circle of support via the App, print or email.

planning andPLAN building ADVANCED PLAN • Great for successionCOMPLETE

ADVANCED PLAN

a personal profile around the Person With

COMPLETE PLAN

◦ Has all the functionality of a Basic Plan,Disability ◦ Includes (PWD).all features from the Basic and as well as further tools: scheduling shifts, Advanced plans PLUS allows you to track ◦ Has all the of a Basic Plan, ◦ Includes all features from thesecurely Basic and • All in one place with ability to activities andfunctionality staff availability, allowing all payments to the carers, therapists, suppliers as well as further tools: scheduling shifts, Advanced plans PLUS allows you to track employees to complete time sheets online and service providers. share with your circle of support via the activities allowing all payments to carers, therapists, suppliers or via theand appstaff – noavailability, more paper! App, print or email. employees to complete time sheets online service providers. ◦and Displays easy to read graphs to monitor or via the app – no more paper! ◦ Sends both push notification and email fundspush and calculates bothand PAYG tax and • Sends both notification email ◦ Displays easy torequirements read graphs to notifications regarding upcoming shifts or superannuation formonitor your notifications regarding upcoming shifts or staff. ◦ Sends both notification funds and calculates both PAYG tax and expiring staff push certifications like and CPR,email Blueexpiring staff certifications like CPR, Blue notifications regarding upcoming shifts or requirements and for your staff. and Yellow Cards or Drivers License. ◦superannuation ScanCards or photograph or Driversinvoices License. receipts expiring staff certifications like CPR, Blueand Yellow within the app and attach to any payment. and Yellow Cards or Drivers License. ◦ Scan or photograph invoices and receipts • Scan orwithin photograph invoices and any receipts and attach payment. ◦ Easilythe splitapp a single shift ortopayment over

within the app and attach to any payment.

multiple NDIS line items to easily claim ◦ Easily split a the single shift or payment over back through NDIS portal. multiple NDIS line items to easily claim back through the NDIS portal.

“I highly recommend the Ability8 App. I like that I can manage payments, keep track of claims, communicate with staff to book and confirm shifts, upload timetables, chat and get feedback all in the one place.” - Lyn “I highly recommend the Ability8 App. I like that I can manage payments, keep track of claims, communicate with staff to book and confirm shifts, upload timetables, chat and get feedback all in the one place.” - Lyn “One of my favourite things about the Ability8 App is the budget and planning for a NDIS plan, the calendar which allows everyone to see what is going on and having it all in the one place. The customer service is also fantastic.”- Jenny “One of my favourite things about the Ability8 App is the budget and planning for a NDIS plan, the calendar which allows everyone to see what is going on and having it all in the one place. The customer service is also fantastic.”- Jenny +61 490 848 908 +61 490 848 908 facebook/ability8 facebook/ability8 instagram/ability8app instagram/ability8app

www.ability8.com.au www.ability8.com.au info@ability8.com.au info@ability8.com.au ISSUE 18

SUMMER 2018

The App created by special needs parents + therapists, for special needs parents + therapists

Convenience

Security

Support

Learnings

Speak to a participating therapist, from anywhere, at any time.

Safely and securely store, access and share health information.

Get practical guidance for activities of daily living & inhome intervention.

Map the moments that matter for a complete health journey picture.

Now LIVE! ING

COM

SOO

www.helpa.app

ISSUE 18

SUMMER 2018

www.sourcekids.com.au

GETTING ORGANISED IN 2019: apps + services to help GET ORGANISED

APPS & SERVICES

NEED SOME HELP WITH SCHEDULES, TO-DO LISTS AND GENERAL ORGANISATION OF YOUR CHILD’S NEEDS? YOU WON’T BE SURPRISED TO LEARN THAT THERE’S AN APP FOR THAT! HERE ARE A FEW TO HELP YOU GET ORGANISED.

Cozi Cozi Family Organiser is the surprisingly simple way to manage everyday family life. It has a shared calendar, reminders, grocery list and more. It’s free, easy to use, and available from any mobile device or computer. cozi.com

Hireup platform and privately message anyone they would like to work with. Users schedule and confirm their own shifts. Once a shift has been worked, Hireup takes care of all the administrative duties like payroll, invoicing, super, tax and reporting. Hireup is registered with the NDIS in New South Wales, South Australia, Tasmania, Victoria, Queensland and the Australian Capital Territory. This means all Hireup users in these states who choose to have their funding agency managed can use Hireup. If you live in a different state, you can still use Hireup with NDIS if you self-managed. hireup.com.au

Ability8 Ability8 is a digital tool that allows you to be in control of your own (or your child’s) care and activities. It integrates several key aspects of disability support and assistance in a user-friendly app...

Wunderlist Wunderlist is a simple to-do list and task manager app that helps you get stuff done. Whether you’re sharing an equipment list, working on an NDISrelated project, or planning your child’s schedule, Wunderlist makes it easy to capture, share and complete your to-dos. Wunderlist instantly syncs between your phone, tablet and computer, so you can access your list from anywhere. wunderlist.com

LeapIn LeapIn is the ultimate NDIS planning tool to help you and your support crew to get ready for your NDIS meeting and to help manage your NDIS budgets. Inside the app you can: • Capture your story and everything you need for your NDIS plan meeting • Have one place to manage your NDIS money • Tell your story only once, then share it • Keep everything you’ll ever need for the NDIS in once place

Whether you are NDIS managed, plan managed or self-managed this app provides a user-friendly platform for managing your disability journey. You can combine highly relevant information like details of specific conditions with a blueprint for daily routines and share information with selected partners. There’s a built-in payroll system, scheduler, timesheets and more. www.ability8.com.au

TicTocTrack TicTocTrack is a GPS tracking watch from istaysafe. Small enough for kids to wear to school, the watch and related web platform enables you to keep track of the wearer’s movements and location at the touch of a button either from your smartphone, tablet or via the istaysafe GPS monitoring system. When your child is wearing the TicTocTrack watch you can view their location, look up the physical address or track them in real time if they are on the move.

MedicAlert Bracelets

Hireup

When you purchase a genuine MedicAlert product, you’re also investing in a vital MedicAlert membership which is linked to their 24/7 emergency response service. It tells emergency services workers that you are protected by MedicAlert, and provides them with vital information about your child’s conditions when seconds count. You become a member of the Foundation at the time of your first purchase of a medical bracelet or necklace.

When someone joins Hireup, they create a profile describing who they are and the kind of support they are looking for. When support workers join, they also create a profile describing themselves and the kind of support they can provide. Hireup users are then able to search for one another on the

With MedAdvisor you can pre-order medications, receive script reminders, and keep track of your child’s medications. MedAdvisor accounts are FREE but must be activated by your pharmacist to connect your medications to your profile. Ask your local pharmacy to activate your account. www.medadvisor.com.au

Tonic Tonic is a pharmacy delivery app that makes it easier and faster to get your prescription medication delivered to your door from registered Australian pharmacies. Simply download the Tonic app for iOS or Android. Create an account, take a photo of your prescription and let Tonic know where you’d like it delivered. Once your order is placed, a local, trusted Tonic Partner Pharmacy will dispense your order in a tamper-proof bag. 90% of orders are delivered within 90 minutes of placing an order and you can track the status of your delivery online. tonicapp.com.au

HELPA HELPA is an innovative and comprehensive digital health app connecting parents with multiple providers and caregivers. The platform can be used to share milestones, changes in health and other essential information on your child. For example, if a parent is using the app, participating therapists can gain visibility into the homes of the families they support, view information in real-time and offer practical guidance to those families in line with therapy goals. http://helpa.app

tictoctrack.com.au

leapin.com.au

Hireup is an online service that provides the tools for people with disability (or their parents) to find, hire and manage their own support workers.

MedAdvisor

medicalert.org.au ISSUE 18

SUMMER 2018

Leap in! Plan Management helps you get ready for your NDIS meeting and is the perfect partner to manage your plan.

Unlock your NDIS. I’ve got my NDIS plan and I’m looking for a plan manager.

I’m getting ready for my first NDIS plan.

Leap in! gives you: • Fast turnaround – join today and claim tomorrow! • Real time tracking of your NDIS budgets • Easy claiming and payment of your invoices • Assistance to find providers that are right for you.

Get started with: • A free NDIS pre-planning consultation – all you need to know in one call • Australia’s leading NDIS planning app • Info on all the options for managing your plan • Experienced and friendly crew ready to help.

It’s time to make it happen. Call 1300 05 78 78 or download the free app today. 22

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www.sourcekids.com.au

GET ORGANISED

✁

surviving

PREPARING FOR SUMMER

summer

THERE SHOULD BE SO MUCH TO LOVE ABOUT THE LONG SUMMER BREAK; NO PACKED LUNCHES TO MAKE, FEWER THERAPY SESSIONS, LONGER, LAZIER DAYS AND SUPPOSEDLY LESS STRESS.

NEVER FEAR, HERE’S A CUT-OUT AND KEEP GUIDE WITH SOME HANDY IDEAS AND RESOURCES TO HELP YOU AND YOUR CHILD COPE.

EXCEPT... WHEN YOUR CHILD HAS MANY ADDITIONAL NEEDS THE UNHOLY TRINITY OF SIX WEEKS OF NO SCHOOL, CHRISTMAS AND TRAVELLING CAN MAKE THE HOLIDAY SOMETHING TO DREAD RATHER THAN LOOK FORWARD TO.

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DOs AND DON'Ts OF

Christmas

Do – prepare and brief your relatives

Your rellies may really want to help but they just may not know how. Brief them by phone or email and make sure they know what are ideal gifts, what not to buy, are there any activities that might cause a meltdown for your child, if there are any diet restrictions or anything else they should look out for.

Do – prepare your child Create a storyboard or visual schedule in a way that works for your child. Work through this in the month beforehand, so when the day arrives, they will know exactly what is going to happen. Let them know that days may be different to how they are usually, especially if you’re staying at a family or friend’s place. If you’re away, take some items that your child is familiar with like a DVD, special pillow or toy so that they have some home comforts if they’re feeling out of sorts.

Don’t – worry about expensive gifts for your child The best gift doesn’t need to be the latest must-have toy with all the bells and whistles that will most likely be forgotten by the time Boxing Day is over. Think about your child and what they love; for some it might be a plastic container with ping pong balls inside, a sensory chew necklace or a plain old box wrapped up. Get creative and give them something they’ll treasure.

Don’t – try too hard! The tree doesn’t have to be Pinterest perfect, the presents don’t need to be wrapped with beautiful creative bows and the day doesn’t have to run with military precision. For most people, Christmas is

6 TIPS FOR THE 6 WEEKS OF SUMMER SIX WEEKS CAN FEEL LIKE A VERY LONG TIME WHEN YOU’RE JUGGLING THE NEEDS OF YOUR CHILD AND THEIR SIBLINGS SO A FEW TRICKS UP YOUR SLEEVE WILL REALLY HELP.

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about bringing family together to rejoice and enjoy the day. Relax and let the day unfold naturally – if little things do go wrong, just roll with it, remember flawed is good and so much more fun!

Let’s be honest – does anyone enjoy shopping with their kids? The Christmas period is not the time to put on a brave face and tough it out – that’s why online shopping was invented. If you can’t face the delivery costs or unknown delivery times then consider if you can leave your child with someone or if you have no option but to take your child with you then perhaps try to shop in short sharp bursts rather than a three hour trek around the mall that is sure to end in tears (everyone’s!).

Don’t – be afraid to say no If your child is struggling and you know that an event will be a step too far, do what is right for you and your family, not what you think is the best for others. People who really care about you won’t be offended. Take a look at the seasonal schedule and work out which events and activities work best for your family – try to save some space for down time and regulation. Do what makes your child happy and make some memories that they’ll cherish forever.

Don’t – stress about what your child eats Obviously if your child is on a special diet then this doesn’t apply but otherwise don’t get too stressed out if your child won’t eat the full spread in front of them. Christmas day is not the time to be fighting food battles or worrying about nutrition. If you’re at home, let them have some familiar foods on their plate and perhaps take a few things with you if you’re visiting. Fidget toys or a book or two may help them sit at the table while you eat or if your child is able, having them be a helper (lay the table, handing out bonbons) may help them to be engaged with the meal time proceedings.

Do – find some time for you Whether it’s a glass (or two) of wine, some leftover pavlova or simply cuddling up with a festive film when the rellies have gone and the kids are in bed – make sure you take some time for yourself on Christmas Day. Ignore the mess – it’ll be there tomorrow.

Don’t – forget to count your blessings It’s too easy to get caught up in the whirlwind of the Christmas season so make sure you take some time to look around and take stock of everything you have around you. When all the presents have been opened remember that our children are our greatest gifts. Life is never perfect and that’s what makes it beautiful.

Do – get some help Whether it’s in the run up to the big day or Christmas day itself you don’t have to do everything yourself – reach out to family and friends if you can. Over the holidays

COUNTING DOWN The structure of school days tend to break down as the school year comes to an end and this can be difficult for some children. Prepare your child ahead of time with social stories about what they can expect and make a visual calendar of when different things are happening. If you need to, rehearse what is going to happen and talk to the school if necessary about how your child is going to participate in any specific events and activities such as concerts or presentations.

people are often especially eager to come to your aid – they just need to know what they can do, even if it’s as simple as keeping a sibling entertained or your champagne glass topped up! If you have NDIS funds perhaps you can schedule some extra support worker time over the holiday period? Your child can get some fun time out in the community while you tackle your to-do list.

Do – get creative with shopping

TO MAKE IT YOUR BEST ONE Y ET !

RESEARCH AND PLAN Brainstorm a list of activities you can do with your child – from the smallest things like colouring and crafts and board games to little trips to the library, swimming and the park. Research your local event listings and local groups to find things that are suitable for your child and their siblings. You can also speak to friends and other parents; join forces for days out and set up play dates. Once you have your list of activities you could then plot a weekly calendar of things to do; try to do something every day even if it’s something as simple as half an hour of colouring, a puzzle or some time on the iPad together. Remember, expensive days out aren’t the be all and end all of everything – time with you is more precious than anything to your child.

www.sourcekids.com.au

✁

THE

RESOURCES FOR PLANNING THE PERFECT HOLIDAY DESTINATION PLANNING Travel With Special Needs is a new service set up by the team behind the popular blog Have Wheelchair Will Travel – all their hand-picked holiday packages have been road tested and assessed by one of their travel with special needs community members. They also have a great blog full of destination tips and invaluable travel advice. www.travelwithspecialneeds.com.au cangoeverywhere.com.au is another online service that will help you make the right destination choice. It has been created to provide information about accessible accommodation, eateries, tourist attractions and more. If you’re interested in cruising, Autism on the Seas (autismontheseas.com) should be one of your first ports of call (see what we did there!). They’re an international organisation that offers cruise vacation services to accommodate adults and families living with children with special needs. Their assisted cruises are selected from regular cruises throughout the year onboard Royal Caribbean, Celebrity, Norwegian, Disney and Carnival Cruise Lines – there is something for everyone!

GETTING AROUND These options for modified and wheelchair accessible vehicle hire will help you explore.

ACCESSIBILITY

Hertz Australia (www.hertz.com.au) has a mobility fleet of vehicles available in 19 locations around Australia. There are 5 and 6 seat Kia Carnival options with rear wheelchair access, ramps and restraints and if you’re heading to Western Australia you can even hire a 12 seater Toyota Hiace Commuter Bus. Time for a break with extended family?

Need to know where you can find the right toilet facilities when you’re out and about? Go to www.toiletmap.gov.au input an address and you’ll see a full list of all the public toilets (including a symbol of the amenities provided). You can also go to changingplaces.org.au to find locations of Changing Places around the country.

Sydney-based disabilitycarhire.com has a diverse vehicle fleet catering for couples, families, and large groups of up to 11 people. Their range of accessibility options include an electric tailgate hoist or stowable ramp; hand controls; left-foot accelerator; and wheelchair roof hoist.

✁

Another useful online service is wheelmap.org – a crowdsourced map of wheelchair accessible places around the world with lots of places in Australia. The service is still in its infancy but it’s definitely worth taking a look if you’re out and about in a new city. An app is also available for download.

Wheelaway.com.au has wheelchair accessible vehicles available to hire for just one day or extended periods in Brisbane, Sydney, Newcastle, Melbourne and Canberra. You can drive them yourself or they can even organise a driver for you!

CREATE VISUAL SCHEDULES Include some quiet time, creative time, activities from your calendar and even time for school work – you could ask your child’s school to send some work home if this familiarity would help your child. Structure and consistency can help some feel more in control of their world and decrease their stress and anxiety. Remember though – routines and structure are good but make sure there’s some flexibility too! A routine and calendar can help your child know what to expect each day but they need to understand that plans can change.

CREATE SOCIAL STORIES If you are heading away or visiting a busy tourist spot a social story can help any feelings of anxiety your child may have about the upcoming event. A search online will bring up heaps of social story templates you can adapt. Addressing all the W questions is a good place to be begin – why, when, where, what, who and how.

LET STUFF GO (AND CHOOSE YOUR BATTLES) If you try to do everything and have everything done your way, it’s going to be a very long six weeks. Accept that your house isn’t going to be display home tidy, shop online if you need to, get a couple of extra takeaways. And if your child wants to wear odd socks (or no socks) or needs a little iPad or TV time while you cook dinner – do whatever works for you and saves your sanity. Those Instagram posts of perfect school holidays with perfect children in perfect homes aren’t real you know!

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GIVE SIBLINGS THEIR FREEDOM If your child’s typical siblings are old enough, let them have some independence. Take help if it’s offered and let them spend time at a friend’s house or if they want to, explore whether there are vacation club options they might be interested in. It’s a long break so take respite and help where you can.

SUMMER 2018

THE BALANCING ACT

GET ORGANISED

WORK / LIFE BALANCE

WORK + FAMILY LIFE

MOST OF US PARENTS NEED TO WORK FOR ONE REASON OR ANOTHER – FINANCIALLY, FOR PERSONAL SATISFACTION, TO PURSUE OUR CAREERS – BUT JUGGLING WORK WITH FAMILY LIFE CAN OFTEN BE TRICKY AND WE FEEL LIKE WE’RE PULLED IN EVERY WHICH DIRECTION. WE TALK TO THREE WOMEN WHO ARE BUSINESS OWNERS, SINGLE MOTHERS, FULL-TIME EMPLOYEES AND FIND OUT JUST HOW THEY MANAGE IT ALL.

TELL US ABOUT YOUR WORK/LIFE BALANCE? I’m lucky enough to own and run a business that doesn’t feel like work – as the CEO/founder of Source Kids I love getting out of bed every day and going to ‘work’. I’m also lucky enough to be able to balance my career and business and enjoy plenty of family time with my husband and two kids (+ the newest addition due any day now!).

WHAT’S THE BIGGEST CHALLENGE YOU FACE? Time management is always the biggest challenge for me and ensuring I set realistic expectations and allow enough time to tick off my various work/life lists.

WHAT STRATEGIES DO YOU USE TO BALANCE THIS? Lists, lists and more lists! With so much going on if it’s not on a list somewhere it doesn’t get done, I’ve tried many different online tools/apps to help manage this but I’m a bit old school and tend to revert to a good old fashioned hand-written list (on pretty paper!) and love the satisfaction of physically ticking it off.

Emma Price

HAS THE NDIS CHANGED ANYTHING FOR YOU?

CEO/Founder of Source Kids, wife to James and Mum to Charlotte (9), Ollie (7) and +1 due any day now!

Absolutely, it has allowed us to ensure we have the right supports in place so that I can work, spend quality time with my family and also have time to myself when I need it.

ANY TIPS FOR STAYING ON TOP OF EVERYTHING? Get organised – have a calendar and a list that sit in one central spot.

GET YOUR SUPPORT NETWORK IN PLACE – YOU OFTEN DON’T HAVE TIME TO COORDINATE A NEW TEAM OR BRIEF FAMILY MEMBERS TO CARE FOR YOUR LOVED ONE IN A TIME OF NEED, SO MAKE SURE THIS IS IN PLACE BEFORE YOU KNOW WHAT HITS THE FAN! 26

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Be in the moment – be present in the situation be it at work, with family or friends or doing your favourite activity. Carve out time for yourself - as parents we always put ourselves last, but even for ten minutes a day it’s important to do something you love – for me it’s running!

www.sourcekids.com.au

Tenille Graham

Owner: ‘Apikali’ and ‘The Cloth Nappy Doctor’. Blogger: ‘Voice of a Carer’ and ‘365CareAbbey’ Mum to Abbey (13), Daniel (11), Nathan (8) and Alistair (7). Wife to James.

TELL US ABOUT YOUR WORK/LIFE BALANCE?

WHAT STRATEGIES DO YOU USE TO BALANCE THIS?

Thinly-disguised yet mostly-controlled chaos. Balance, for me, is not about how many hours work I do in any given day, or trying to package it into a nice timetable with set moments for people or projects. My work is part of my escape and my contribution to society. My family is my greatest joy and deepest struggle. It’s a fine, kinetic balance that is never truly mine to control. Yet I need them both.

I use a big A4 diary, with a pen and whiteout. Everything goes in here for work, school, medical and family business. We review it at the beginning of the week and ensure we are ready to roll!

WHAT’S THE BIGGEST CHALLENGE YOU FACE? Unpredictability. My daughter has a palliative condition, so we have limited time, but we don’t know how long. As such we try to live as dynamic a life as possible with the normal influences and interruptions that come with three healthy boys, husband’s work and the day to day running of a small family business. We know that one day it’ll all change, but can’t really plan for it. Nor can we ignore it, so we choose to live in the moment as much as we can.

I also have a daily list that reminds me to do the dishwasher, clothes washing and to exercise. Those are the 3 jobs I MUST do every day. Then the list becomes longer with all the other stuff.

HOW DO YOU MANAGE CRISIS SITUATIONS?

ANY TIPS FOR STAYING ON TOP OF EVERYTHING?

We try to be prepared. We face crisis situations every day with the violent and life-threatening seizures that Abbey endures, so we run a tight ship at home. We have contingencies in place for the family business. We have bags packed for hospital trips. Ultimately we build resilience, and allow time to recover afterwards.

Organise yourself. If your current methods don’t work, find others. Invest in tools and equipment that can help you stay organised. I just bought a backpack to replace as my handbag, as I carry around so much stuff. It may not look very fashionable, but it gives me the organisation I need.

INVEST IN TOOLS AND EQUIPMENT THAT CAN HELP YOU STAY ORGANISED. TELL US ABOUT YOUR WORK/LIFE BALANCE? I’m a contractor, so there are no sick days or annual leave days. I work, I get paid. I don’t work, I don’t get paid. I find myself working as much as I possibly can during school term so I can take some time off during the holidays. I don’t have work/life balance on a daily, weekly or even monthly schedule, it’s on a school term basis!

WHAT STRATEGIES DO YOU USE TO HELP?

Emma Benetiz Self Employed – Business Consultant – Single parent Mum to Jordan (15), Max (13), William (10) and Lucy (6)

Organisation, organised chaos, organisation. And being able to accept that not every meal is meat and three veg, or that the house does not have to look like a display home every day. I have a calendar in the kitchen that I write EVERYTHING onto and then I read through it with the kids on a Sunday night so they know what the week ahead looks like. Also, it’s all about putting my support people – friends and parents of my kids friends, to use; if they offer help, I accept it.

WHAT DO YOU NEED MOST FROM THE PEOPLE YOU WORK WITH? The people I work with understand that I achieve just as much working from home as working in the office, sometimes more! Before I sign a new contract, I give full disclosure on my home life and the demands it places on me.

HAS THE NDIS CHANGED ANYTHING FOR YOU? I have just received approval for most of my requested plan. Unfortunately, I am not receiving the 1:1 in home support I was receiving prior to transitioning

HOW DO YOU MANAGE CRISIS SITUATIONS? I have the best friends a girl could ask for, and the kids are old enough to call ambulances and give the phone operator all the instructions necessary. Last crisis, while one was on the phone to the ambulance, the other was calling a friend. Employers understand that health ALWAYS comes first and funnily enough, most of them have experienced family crisis themselves and understand. While I don’t get a lot of regular support from extended family, at times of crisis, I know I can call on them to collect the children.

ANY TIPS FOR STAYING ON TOP OF EVERYTHING? Honestly – accepting that you probably won’t be on top of everything all the time is probably the biggest thing. You really need to set realistic goals for what you want to achieve. Some things may get missed, and that’s ok. I don’t beat myself up if I don’t make it to assembly every week, gosh I’m lucky if I make it to one a term!

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SUMMER 2018

GET ORGANISED

2019 RESOLUTIONS

REALISTIC

ns resolutioFOR 2019

OUT WITH THE OLD AND IN WITH THE NEW. OR SO THEY SAY. We know that the New Year is all about rethinking the things we do daily, changing what’s not working and giving new things a try, but that’s easier said than done when your child has many specific needs and strict timetables relating to their care and wellbeing. However, if you think small and manageable, and approach things with a whole heap of positivity, it is possible to make a difference. Take a look at some of the realistic resolutions we’ve put together to see if you can find some ideas that will work for you.

BE MORE ORGANISED

DON’T APOLOGISE

Well, we had to start with that one, didn’t we! We’re not suggesting you change your whole routine but why not try out just one or two of the ideas on pages 16 and 17. Something as simple as meal planning or organising your life in a planner may make all the difference.

Either for yourself or your child. You are both doing the best you can and that is good enough.

SCHEDULE TIME WITH SIBLINGS However much you intend otherwise, a special needs sibling can often get sidelined due to the more urgent healthcare needs of their brother or sister. Instead of a vague sense that you need to spend more time with them, schedule time in your calendar or planner, even if it’s something small like a quick milkshake after school or a game of cards before bed-time. Booking in time will help make it happen.

STOP READING THE COMMENTS We love the Internet – we know it’s a lifeline for us all on our parenting journeys so we’re not going to say go online less, but how about committing to staying out of the comments or staying away from online debates. The comments section of posts and articles can be a pretty depressing place sometimes; getting caught up in online dramas or getting offended by an obvious troll’s comments is not good for your mental health and precious minutes and hours could be spent so much more effectively.

Try to implement some little changes that make a difference to your own health and wellbeing. Perhaps setting a goal like running a 10k event is a few thousand steps too far (if it’s not, then hats off to you!), but trying to walk for 20 minutes a few times a week or setting a timer for a 10-minute meditation time-out could be achievable. As hard as it is, don’t let your child’s disability define you. Do something you love at home a few times a week – craft, paint, do some mindful colouring or set some time aside to Facetime with a close friend. ISSUE 18

SUMMER 2018

The same as making time for a sibling, try to schedule in time that your whole family can spend together making precious memories. Start the year with a wish list of things you’d like to do and check them off one by one. Again, the key is don’t try to think too big. Family walks, picnics in the park, regular family movie sessions, game nights or a simple game in the backyard can mean more to kids than big, expensive days out.

HUG AND KISS YOUR FAMILY EVERYDAY This one should be an easy one!

MAKE YOU A PRIORITY

CARVE OUT FAMILY TIME

CELEBRATE THOSE MILESTONES Another simple one. However small the steps your child is taking, rejoice in what they can do and try not to obsess too hard about the things they can’t.

RE-EVALUATE YOUR CHILD’S GOALS AND THERAPIES You may be doing this as part of your NDIS plan but the New Year is a good time to look at things with a new perspective. Is there a different therapy you would like to try? Are things working with the therapists your child has currently? What goals do you have for the year?

BE THANKFUL Create a new habit of practicing gratitude. We love the idea of a gratitude journal to help you reflect on the good things that you have in your life. Life can be difficult and testing and stressful and full of things that make you want to shout ‘why, me!’ but it’s also full of little gems like the kindness of a stranger, your child’s smile, random hugs, new books, a great coffee, beautiful blossoms on a tree. Focus on the good in each day and see the effect it can have. www.sourcekids.com.au

POWER OF VISUAL SCHEDULE

Visual Schedules GET ORGANISED

AND HOW THEY CAN HELP YOUR CHILD

VISUAL SCHEDULES CAN HAVE SUCH A SIGNIFICANT IMPACT ON YOUR DAILY LIFE AS A PARENT TO A CHILD WITH A DISABILITY. A VISUAL SCHEDULE IS A DAILY ROUTINE CREATED BY PARENTS OR TEACHERS, PUT UP IN A PLACE WHERE THE CHILD CAN SEE IT. BY OUTLINING THE PLANS FOR THE DAY, VISUAL SCHEDULES CAN ASSIST BY CURBING MELTDOWNS AND SMOOTHING OUT THE DAYTO-DAY ROUTINE. There are so many benefits to incorporating visual schedules into your child’s school and home life. Here are 11 reasons to make them a part of your everyday routine:

1. THEY SUPPORT LITERACY DEVELOPMENT

2. THEY REINFORCE VERBAL INSTRUCTIONS

By incorporating pictures of the tasks included, such as brushing teeth, visual schedules aid in the recognition of words, comprehension and the relationship between words and pictures. Pictures make it a visually pleasing tool and make it easier to get your child invested in the daily processes.

Many special needs children struggle with verbal instructions. The visual schedule can reinforce your instructions, without you unnecessarily repeating yourself.

4. THEY REMOVE EMOTIONAL RESPONSE AND PROVIDE STRUCTURE Visual schedules remove the option of negotiation, making day-to-day life more of a series of expectations, as opposed to emotional desires. Rather than repeating yourself and getting frustrated, there is a neutral source outlining the expectations. Your child’s independence is enhanced if they are able to use the schedule to remind them of their daily tasks.

Visual schedules allow kids to help plan out their day. They can work with their parents and teachers to build the routine, helping develop their planning and sequencing skills. They may also develop the ability to move on to the next activity on the schedule after completing the previous one. If required, tasks can be broken down into smaller steps to assist with the mastery of basic skills.

5. THEY MAKE TRANSITION EASIER

7. THEY EDUCATE ABOUT TIME AND SEQUENCE

Children with autism especially tend to thrive on routine, experiencing difficulties with transitions or changes to what’s expected. Having a visual schedule up in plain sight, both at home and at school, means your child will know what time certain things will happen. This can help to reduce meltdowns and struggles about moving to the next task.

Children often struggle with the abstract concepts of time. Visual schedules can be used to teach ideas such as first, next, last or before and after. Once your child starts to understand what these time lapses mean, it can help to minimise tantrums and meltdowns led by their emotions.

6. THEY INCREASE FLEXIBILITY Life happens and changes in the daily routine will occur. Having a visual schedule can be a great way to encourage some flexibility within your child. By making changes clear on the visual schedule, you can help prepare your child to be flexible with a new activity.

8. THEY ENCOURAGE HEALTHY HABITS By activating their visual learning skills through using images of their day, kids can start to understand more and cooperate better. The familiarity of their day can also help improve their memory and independence. A visual schedule has the ability to increase security and stability for a child with special needs.

9. THEY REDUCE ANXIETY Visual schedules can help reduce anxiety as they clearly outline what’s happening next. If you’re a teacher or parent and have a child who constantly asks questions, it can be because they’re anxious about what’s coming. A schedule allows them to check their own routine instead of checking with you. With reduced anxiety, they can better focus on the task at hand.

3. THEY TEACH RESPONSIBILITY AND PLANNING

10. THEY BUILD SELF ESTEEM Visual schedules provide children with the opportunity to develop responsibility and independence. As a by-product, their self-esteem can also be strengthened. By checking things off on the visual schedule, they can see their progress and feel a sense of achievement.

11. THEY CAN BE REFERENCED THROUGHOUT THE DAY This is particularly important in a school context, where your child’s teacher may have many students to attend to. Having a permanent visual schedule in the classroom means it can be checked as needed throughout the day.

IF YOU DON’T ALREADY INCORPORATE VISUAL SCHEDULES INTO YOUR CHILD’S SCHOOL AND HOME LIFE, DEFINITELY CONSIDER DOING SO. THERE ARE SO MANY BENEFITS FOR THEM AND FOR YOUR WHOLE FAMILY. ISSUE 18

SUMMER 2018

GET ORGANISED

AN OT'S GUIDE TO BEING MORE ORGANISED

OT TIPS TO HELP YOUR CHILD’S ORGANISATIONAL

SKILLS

BY HAYLEY HUGHES

ARE YOU CONSTANTLY REPEATING THE SAME INSTRUCTIONS OVER AND OVER? DOES YOUR CHILD LEAVE THEIR HOMEWORK AND ASSIGNMENTS TO THE LAST MINUTE? DO SCHOOL BAGS COME HOME WITH CRUMPLED HOMEWORK AND SCHOOL NOTES? IF YOUR ANSWER IS A RESOUNDING YES, YOUR CHILD MAY NEED SOME EXTRA SUPPORT WITH THEIR PLANNING AND ORGANISATION SKILLS. What are planning and organisation skills? Planning and organisation skills are cognitive processes that come under the umbrella term of executive functioning. Executive functioning describes the group of thinking skills used by people to plan and organise their actions to achieve their goals. We use our executive functioning skills to plan, focus, attend, remember instructions and juggle multiple tasks successfully.

PLANNING – IS THE PROCESS OF THINKING ABOUT THE ACTIVITIES REQUIRED TO REACH A DESIRED GOAL.

ORGANISATION – REFERS TO THE ABILITY TO DIRECT AND BRING ORDER TO THE TASK AT HAND.

WHY DO SOME CHILDREN STRUGGLE WITH THESE SKILLS? Experts do not know exactly what causes executive functioning difficulties. However, there are some likely causes and contributing factors.

1. GENETICS AND HEREDITARY

3. DIFFERENCES IN BRAIN CHEMICALS

If other family members have displayed difficulties with planning and organisation skills, it increases the likelihood of children in the family also displaying these difficulties.

Norepinephrine and dopamine are essential chemicals to support the brain to maintain focus and control impulses. It is thought that the brain in people with executive functioning difficulties may block the use of norepinephrine. When this chemical is blocked, it impacts the child’s ability to attend and control their impulses. This same process is also seen in children with ADHD.

2. DIFFERENCES IN BRAIN STRUCTURE The prefrontal cortex is the area of the brain that controls executive functioning. Researchers are exploring if the size or shape of the prefrontal cortex is different in children with planning and organisation challenges. Executive functioning difficulties is not a sign of low IQ. In fact, most children with executive functioning difficulties display average or above average intelligence. 30

ISSUE 18

SUMMER 2018

4. OTHER ISSUES Children with executive functioning issues often have other medical conditions or diagnoses. Children with ADHD, dyslexia, Autism Spectrum Disorder and other neurological conditions often struggle with their executive functioning skills.

If a child has difficulty with their executive functioning skills, they may: • Have difficulty starting and finishing tasks • Frequently lose items • Have difficulty keeping their bag/room/desk tidy • Have difficulty remembering multi-step instructions • Have difficulty editing their schoolwork • Struggle to complete tasks in a reasonable timeframe • May forget to bring home homework

www.sourcekids.com.au

HOW CAN I HELP MY CHILD? THE GOOD NEWS IS THAT CHILDREN CAN CONTINUE TO DEVELOP AND IMPROVE IN THIS AREA.

Tips for home

DEVELOP MORNING AND AFTERNOON ROUTINES Having a consistent routine can support children to learn how to organise their belongings. For example, every afternoon take shoes off and put in the same place by the front door, unpack bag and put homework/school notes in the same spot on the desk, hang bag on the same door hook.

USE A VISUAL TIMETABLE Using a timetable for the week supports children to learn how to plan ahead. They can look to the timetable to see what they need to pack in their bag for the day, or when homework is due.

USE A VISUAL SCHEDULE FOR TASKS Visual schedules can support children to keep on track with what they need to do in the morning/afternoon. Using a schedule reduces the need for you to repeat verbal instructions for each step. Instead, you can refer to the schedule, supporting your child to become more independent with their morning/afternoon jobs.

REWARDS AND INCENTIVES Using a reward system can provide motivation for your child to learn and implement the visual schedule. Consider what rewards will work best for your family. Rewards do not need to be food based items or toys. Some reward ideas may include screen time or choosing the music on the commute to school, or choosing a fun game or activity for the weekend.

LABEL ITEMS Having items labeled means they are more likely to come back to you if they are misplaced. It also supports your child to locate their items at school.

PREPARE THE NIGHT BEFORE When possible, prepare as much as you can the night before. For example, have your child lay out their school uniform, pack homework in their bag, pack sports gear in their bag.

ORGANISE THE SCHOOL BAG

PLANNING AND ORGANISATION APPS There are many apps available to support both primary and high school students with their planning and organisation skills. Weâ&#x20AC;&#x2122;ve featured a couple in our We Love section. It is important to remember learning and implementing new strategies takes time. So patience and persistence is key when supporting your child to learn and implement these new strategies. Initially, these strategies might take some extra effort for your child. However, once they learn these new skills they can take steps to plan and organise their actions to achieve their goals now and into adulthood.

Encourage your child to place frequently used items in the same section each time they use their bag. You could also attach a luggage tag with a checklist of reminders for what to take to school and what to bring home from school.

PROVIDE THE WHY Explaining why it is important to plan and organise will help your child to see the purpose in the task. For example, it is important to unpack your school bag each day so any school notes can be signed so you can attend school outings. Having a clean room is important so you can find your favourite toys easily and they are not lost or broken.

Tips for school COLOUR CODE BOOKS

Using colour coding for subjects at school supports children to find which books they need. For example, have a blue cover for all Math books and a red cover for all English books etc.

HAVE ONE HOMEWORK FOLDER WITH COLOUR CODED TABS FOR EACH SUBJECT Having one folder for all subjects is easier to keep track of compared to multiple different homework folders.

USE A DESK ORGANISER Using a desk organiser can support children to learn where to place items in their desk to keep it neat and tidy.

USE VISUALS Using visual supports reduces the demands on a childâ&#x20AC;&#x2122;s working memory and attention for remembering all verbal multi-step instructions. Examples of visual supports to plan and organise work include, highlight key points on worksheets, make a checklist to break down the steps of the task, use mind maps to write out ideas. Hayley Hughes is an Occupational Therapist at Tools 4 Life. Visit www.tools4lifeot.com or www.facebook.com/tools4lifeot/ to learn more about how Tools 4 Life can support your child.

ISSUE 18

SUMMER 2018

GET ORGANISED

NDIS GUIDE

AN NDIS GUIDE FOR PARENTS: 6 EASY STEPS

STEP 1: GET PREPARED

The National Disability Insurance Scheme (NDIS) opens a new world of possibilities for families of children with a disability by giving you more control and choice over your child’s supports. Because navigating this new system can sometimes feel a bit overwhelming we’ve created this simple, step-by-step guide to help. NOTE: this guide applies to children over 7 years of age. If your child is younger than this, they might be eligible for the NDIS’s ECEI program (https://www.ndis.gov.au/ecei)

STEP 1: GET PREPARED

STEP 4: ORGANISE YOUR SUPPORTS

It’s important to prepare well for the NDIS. Here’s how: • Check your child’s eligibility at www.ndis.gov.au and apply. • Learn the basics about how the NDIS works and what it funds. • Create a preplanning checklist (or use the handy one on Plan Partners’ website) that includes what you want to get out of the NDIS. • Organise a planning meeting with your Local Area Coordinator (LAC). • Ask questions – either online or to an expert – to ensure you’re ready.

Now you have your NDIS plan, it’s time to put it into action by finding the right service providers for your child’s situation and needs. It’s important to get this part right so here are some handy tips: • Support coordination can make finding the perfect provider a lot easier. If this is included in your child’s plan, contact a support coordinator, to talk about how they can help. • Select your service providers but be sure to do some research online or contact them first to see if they’re a good fit. • Set up service agreements with your service providers. These are basically a simple contract confirming when the supports will be delivered and at what cost, ensuring you’re protected.

STEP 2: YOUR NDIS PLANNING MEETING Your planning meeting will examine your child’s needs and what’s included in their NDIS plan, so it’s important to get it right. Here’s how: • Bring any supporting documents that will help you, such as your preplanning checklist. • Bring a friend or someone you trust for moral support. • Take plenty of notes throughout the meeting so you can refer to them later. • Express your child’s needs and goals clearly. For example, if you’d like to include Plan Management (support with managing your NDIS funds) or Support Coordination (support with finding and connecting you with the right service providers), make sure you specifically ask for it. • Ask questions! Don’t be afraid to speak up if you don’t understand anything or need some clarity.

STEP 3: GET TO KNOW YOUR NDIS PLAN After your planning meeting, you’ll receive your NDIS plan. If anything’s incorrect, now’s the time to get it fixed, so as soon as you get it: • Check all the details to make sure everything’s correct and you’re happy with how the funds have been allocated. • Contact your Local Area Coordinator and ask for a review if there are any issues.

STEP 2: YOUR NDIS PLANNING MEETING

STEP 3: GET TO KNOW YOUR NDIS PLAN

STEP 5: MANAGING YOUR FINANCES Once you’ve selected your service providers, your child can start receiving their supports. You’ll need to ensure their service providers are paid and manage your budget, so here’s some things to keep in mind: • Plan Management can help you bring your child’s plan to life by taking care of the administrative burden and much more. • Keep a record of all the supports your child receives. • Track your budget to ensure you don’t overspend.

STEP 4: ORGANISE YOUR SUPPORTS

STEP 6: YOUR ANNUAL PLAN REVIEW Each year, your NDIS plan will be reviewed to ensure it’s still suited to your child’s needs. As with your initial planning meeting, make sure to:

STEP 5: MANAGING YOUR FINANCES

• Prepare in advance by making a list of the services your child has received, along with anything you want to change, and why. • Be clear and explain the reasons behind your requests for the upcoming year. NDIS guide written by Plan Partners, for more information and independent advice, contact Plan Partners on 1300 333 700 or visit www.planpartners.com.au

STEP 6: YOUR ANNUAL PLAN REVIEW

On your side, by your side. Plan Part

Plan Partners is Australia’s leading expert in Plan Management and Support Coordination. You can rely on us to be on your side at every stage of your NDIS journey. 1300 333 700 | planpartners.com.au

ISSUE 18

SUMMER 2018

www.sourcekids.com.au

Pilates for Mums & Bubs Fridays at 10am Your one stop provider of continence therapy including: Registered NDIS provider

www.conquip.net.au 03 9876 3374

assessments product recommendations ● bladder and bowel support ● management and support

A group mat Pilates class designed for new mums to participate in activity without the hassle of arranging child care. • Low stress • Re-gain strength • Quick noticeable improvements

● ●

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

We would like to hear how you would like your NDIS plan managed JOIN US AT OUR UPCOMING INCLUSIVE SUMMER CAMPS! Location: Camp Manyung, Mount Eliza Age Group: 8 to 16 years Date: 7 to 11 January 2019

Northcity Accountants

Enjoy a range of activities suitable for all abilities, including: Giant Swing, flying fox, high ropes, beach discovery and more!

> Meet new people

Northcity Accountants are approved NDIS Plan Management Accountants based in Northern Melbourne. Our service is available to you for free, if your NDIS plan already includes Plan management - ‘Improved Life Choices’.

> build leadership skills > have fun

Camping Adventures is an inclusive non-denominational program. We reserve 25% of camper places for young people living with a mild disability.

Office Locations: Preston & South Morang

Contact Julius Mather, phone 0404 038 796 Email julius@accountantsandtaxagents.com.au

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

Get in touch to find out more: campingadventures@ymca.org.au 0422 835 615 vicyouth.ymca.org.au/camping adventures

YMCA are a registered NDIS provider.

Dr Evelyn Yeung B.D.S., D.Clin.Dent. (Paeds.)

181 Balcombe Road, Beaumaris Ph. 9583 1378

reception@happysmilesforkids.com.au HSKsMrMiso

hsfk_mrmiso

Croc’s Playcentre is a party venue like no other! Why not let us take care of the cleaning up and all the FUN! With an exciting range of themed, hosted party rooms we can create the special day your child is dreaming of.

13000 CROCS crocsplaycentre.com.au

! CrocsPlaycentres

N O S WHAT' CALENDAR OF

17 Wolfgang’s Magical Musical Circus relaxed performance Sydney Opera House 02 9250 7111 17 Wolfgang’s Magical Musical Circus relaxed performance Sydney Opera House 02 9250 7111 19 Ickypedia relaxed performance Monkey Baa Theatre Company, Lendlease Darling Quarter Theatre, Sydney. 02 8624 9340

27 Variety Kids Christmas Party International Convention Centre, Darling Harbour, Sydney kidschristmasparty@varietynsw.org.au

Special Children’s Christmas Party Melbourne Showgrounds, Melbourne 03 8657 5557

Nov 24, Feb 23 Maroochydore, Sunshine Coast Dec 2, Jan 13, Feb 3 Len Wort Park/Flat Rock Beach, Currumbin

Dec 1 Umina Beach, Central Coast Dec 8 Clarkes Beach, Byron Bay Dec 8, Feb 9 Flynn’s Beach, Hastings

mail@specialchildrenschristmasparty.com.au

9 The Grinch Sensory Movies Screenings QLD, NSW, SA, NT & WA sensorysouls.com.au

QUEENSLAND:

NEW SOUTH WALES:

Special Children’s Christmas Party Brisbane Convention & Exhibition Centre 07 3245 1588

5 Special Children’s Christmas Party Rosehill Gardens Racecourse, Sydney 02 9098 5994

DISABLED SURFERS DAYS

Jan 12 PT Leo

Throughout December – Sensory Santa Across Australia – see sensorysouls.com.au for locations and bookings

3 International Day of People with Disability www.idpwd.com.au

WHAT'S ON

VICTORIA:

December 1

EVENTS

January

November

SOURCE KIDS

Jan 5 Jetty Beach, Coffs Harbour

February 3 Ralph Breaks the Internet Sensory Movies Screenings QLD, NSW, SA, NT & WA sensorysouls.com.au 4-10 Feeding Tube Awareness Week www.feedingtubeawarenessweek.org 13-19 Duchenne Muscular Dystrophy Awareness Week

Jan 19 Coast Guard Tower Beach, Kingscliff Feb 2 Main Beach Woolgoolga Feb 17 Main Beach Minnie Waters Feb 23 Collaroy For more information, visit: disabledsurfers.org/events-calendar

24 How to Train Your Dragon 3 Sensory Movies Screenings QLD, NSW, SA, NT & WA sensorysouls.com.au Feb 25-March 3 – Hearing Awareness Week www.hearingawarenessweek.org.au 28 Rare Disease Day www.rarevoices.org.au

ISSUE 18

SUMMER 2018

2019 PLANNER JANUARY

FEBRUARY

MARCH

APRIL

MAY

JUNE

2019 PLANNER

SOURCE KIDS AUTUMN OUT

SOURCE KIDS MELBOURNE EXPO

SOURCE KIDS WINTER OUT

www.sourcekids.com.au

JULY

AUGUST

SEPTEMBER

OCTOBER

NOVEMBER

DECEMBER

FR SA

SOURCE KIDS BRISBANE EXPO

SOURCE KIDS SPRING OUT

SOURCE KIDS SUMMER OUT

2019 PLANNER

SOURCE KIDS

2019 KEY DATES

KEY DATES FOR 2019 SCHOOL TERMS AUSTRALIAN CAPITAL TERRITORY

QUEENSLAND

Term 1 (new students) 4 February to 12 April

Term 1

29 January to 5 April

Term 2

23 April to 28 June

Term 1 (returning students) 5 February to 12 April

Term 3

15 July to 20 September

Term 4

8 October to 13 December

Term 2

29 April to 5 July

Term 3

22 July to 27 September

Term 4

14 October to 19 December

SOUTH AUSTRALIA Term 1

29 January to 12 April

Term 2

29 April to 5 July

NEW SOUTH WALES

Term 3

22 July to 27 September

Term 1

(Eastern Division)

Term 4

14 October to 13 December

29 January to 12 April

Term 1

(Western Division)

5 February to 12 April

Term 2

29 April to 5 July

Term 3

22 July to 27 September

Term 4

14 October to 20 December

TASMANIA Term 1

6 February to 12 April

Term 2

29 April to 5 July

Term 3

22 July to 27 September

Term 4

14 October to 19 December

29 January to 5 April

Term 1

(Urban schools)

Term 1

29 January to 12 April

Term 2

23 April to 28 June

Term 1

(Remote schools)

Term 3

15 July to 20 September

30 January to 12 April

Term 4

7 October to 20 December

Term 2

23 April to 28 June

Term 3

23 July to 27 September

WESTERN AUSTRALIA

Term 4

(Urban schools)

14 October to 12 December

Term 1

4 February to 12 April

Term 2

29 April to 5 July

Term 4

(Remote schools)

22 July to 27 September

14 October to 13 December

Term 3 Term 4

14 October to 19 December

SUMMER 2018

26 JANUARY AUSTRALIA DAY 28 JANUARY AUSTRALIA DAY HOLIDAY 19 APRIL GOOD FRIDAY 21 APRIL EASTER SUNDAY 22 APRIL EASTER MONDAY

6 MAY LABOUR DAY (QLD only)

10 JUNE QUEEN’S BIRTHDAY

(National except QLD & WA)

30 SEPTEMBER QUEEN’S BIRTHDAY (WA only)

NORTHERN TERRITORY

ISSUE 18

1 JANUARY NEW YEAR’S DAY

25 APRIL ANZAC DAY

VICTORIA

PUBLIC HOLIDAYS

7 OCTOBER LABOUR DAY

(ACT, NSW & SA only)

7 OCTOBER QUEEN’S BIRTHDAY (QLD only)

5 NOVEMBER MELBOURNE CUP DAY (VIC only)

25 DECEMBER CHRISTMAS DAY 26 DECEMBER BOXING DAY 31 DECEMBER NEW YEAR’S EVE www.sourcekids.com.au

MELBOURNE WE ARE COMING YOUR WAY!

...

KingKids Early Learning Centres and Kindergartens Childcare that excites children and delights parents

Enquire about our inclusive programs - we cater to your unique child! We are proud to bring our commitment in our ‘home away from home’ environments, with natural and inclusive play spaces. Our Values: Fun & Laughter, Diversity & Individuality, Respect & Tolerance, Honesty & Integrity, Teamwork & Collaboration. Berwick, Golf Links Road - 03 8786 7866 Narre Warren,Fleetwood Drive - 03 8790 5155 NEW!!! Rowville, 1165 Stud Rd 03 8738 8770 www.kingkids.com.au !

DISABILITY

EXPO Save the date!

MARCH 29-30, 2019 MELBOURNE CONVENTION & EXHIBITION CENTRE

Bringing you the latest disability products, services and technology under one roof for two days at Melbourne’s biggest disability expo! Visit www.sourcekids.com.au/expo for full details + follow our event page on Facebook for updates.

Give your child new freedom and independence this Summer with a TRIVEL adaptive Trike! • Attain your therapy goals all whilst having fun! • Designed for children from 4 to 10 years old. • Featuring seat adjustment, lateral support back, adjustable and folding handlebar. • Explore the great outdoors with your child this Summer… with a Trivel Trike. Ph: 1300 953935 E: sales@stepaheadpaediatrics.com.au www.stepaheadpaediatrics.com.au

ADVERTISE YOUR BUSINESS HERE AND TELL MORE THAN 25,000 PEOPLE ABOUT YOUR PRODUCT OR SERVICE!

Contact advertising@sourcekids.com.au to find out more.

SAVE THE DATES SYDNEY

8-9 MAY 2019

NOW TWO DAYS

BRISBANE

15-16 MAY 2019 CANBERRA

27-28 AUG 2019

For more information contact Allison Miller on (02) 4646 1453 or amiller@intermedia.com.au

PART OF

iCREATe

www.atsaindependentlivingexpo.com.au ISSUE 18

SUMMER 2018

SOURCE KIDS

CHRISTMAS GIFT IDEAS

All I want for

CHRISTMAS GIFT GUIDE

. .. s i s a Christm A.

FOR THE CHILD A. H EARING PROTECTION EARMUFFS FOR LITTLE EARS

Size adjustable and designed to grow with your child, they are compact and lightweight so easy to keep handy for family adventures. Perfect for protecting little ears in any noisy environment such as at fireworks, live music concerts or sporting games, in flight travel, car racing and more. Average noise reduction of 26 decibels (dB). RRP from $26.99 www.earmuffsforkids.com.au

B. DBPOWER 9” PORTABLE DVD PLAYER

Available in either blue or pink it has a swivel screen and can attach easily to a car headrest. The player has a break-point memory function and remote. RRP $59.99 www.amazon.com

C. YOUTH SPOKE GUARDS

Add some spunk to your child’s wheelchair with a range of spoke guards from Wheelchairs and Stuff. Limited designs are available and can fit any standard 22 or 24inch wheel. RRP $360.00 www.wheelchairsandstuff.com.au

D. M ELISSA & DOUG MAGNETIC DRESS-UP E.

Pretend play at its finest. These sets include a magnetic wooden figure with stand and magnetic clothing pieces so your Joey or Abby and Emma will always be suitably attired. RRP from $29.95 www.edresources.com.au

E. ABLE CLOTHING RANGE

From shorts and polo tees through to jumpsuits, Able clothing offer specially designed garments for our children. Sized 4 through to 16, these designs offer ease of dressing, comfort, quality and fashion. RRP from $35.00 www.ableclothing.com.au

ISSUE 18

SUMMER 2018

www.sourcekids.com.au

F. ORTHOPAEDIC FOOTWEAR

Introducing Monaco 3DA and Monaco 3FD orthopaedic sandals to the Well & Able core range from Memo. Offering therapeutic supports to benefit children with low muscle tone, weak or hypermobile joints, these are great sandals for everyday wear. A must have Christmas gift for your child, with free delivery Australia wide before Christmas. RRP from $198.00 www.wellandable.com.au

G. DK BABY TOUCH AND FEEL BOOKS

Teach, learn and take your child on an adventure with touch and feel books. Educational, inexpensive and a fabulous way to interact, don’t you think? RRP $9.99 www.penguin.com.au

H. E XTRA BRIGHT LIGHT CUBE AND ACCESSORIES KIT

Create an amazing sensory experience with this portable, durable and rechargeable light cube. It includes counting and sorting rings, 12 optical illusion sheets, paint and squiggle pipettes, vials, x-rays and more. Use it as a 3D light box to encourage children to learn, develop and grow whilst having fun! RRP $309.90 www.teaching.com.au

I. HOWDAHUG SEAT J.

Designed as a recreational/camping chair that easily rolls up for storage. They are great for mat time at school or in the living room at home. Movement seekers can get vestibular input by rocking. Extra proprioception is provided by the way the seat ‘hugs’ the body. It is great for kids with low muscle tone too and available in different sizes. RRP from $100.00 www.skillbuilders.com.au

J. BILBY

Self-regulation is hard when there is sensory overload and some children just need a space to call their own. With the Bilby they can feel snuggly and safe, reading, relaxing or playing quietly without being restricted. RRP $197.00 www.myburrow.com.au

K. ANEMONE FOOT SLIDERS

Do your kids need to burn off some steam? Allow your home to become a skating rink – whilst they have fun sliding around with these slippers on, they are cleaning your floors too, woo hoo! RRP $46.95 www.sensoryconnect.com.au

L. S PRINGFREE® MEDIUM ROUND TRAMPOLINE

Springfree’s innovative design is the world’s safest, highest quality, longest lasting trampoline supported by a full 10-year warranty. The Springfree Medium Round trampoline measures 3m x 3m, and is the only trampoline recommended by Consumer Group CHOICE®. Give your family a Springfree Trampoline – the ultimate Christmas gift this silly season! RRP $1699.00 www.springfreetrampoline.com.au

ISSUE 18

SUMMER 2018

FOR THE PARENT

A. AMAZON ECHO

A hands-free speaker you control with your voice. Echo connects to the Alexa voice service to play music, ask questions, make calls, send and receive messages, provide information such as news or sports scores, weather and much more. www.amazon.com.au

B. CUSTOM CHRISTMAS FAMILY SOCKS

Hilarious! Imagine the look from the receiver when they open up a pair of socks only to be greeted with your child’s face, or the dog’s face or YOUR face! www.myphotosocks.com

C. RESPITE CARE

Dial-An-Angel is an NDIS provider and are approved for personal care and related supports such as household tasks and respite care. A great gift to allow parents to take a break or get to appointments and activities while their loved one is cared for. Currently servicing ACT, NSW, QLD & VIC. www.dialanangel.com

D. BEST RESTAURANTS GIFT CARD

With over 700 restaurants across Australia to choose from, this gift card may well be the perfect gift to give (and receive!). www.bestrestaurants.com.au

E. INSPIRATIONAL WALL ART

Wall art can stir the soul as well as be a decorative feature around your home. Keep motivated and fill your space with unique style. www.happywallz.com.au

F. OCCASIONAL CATCH UP CLEANING SERVICE

Give the gift of a clean home! Book a single clean or customise the service to meet your loved ones needs and your budget. Expert cleaners who are screened, police checked, trained and insured and service is available Australia wide. www.absolutedomestics.com.au

G. STOP, DROP & BREW PACK

Perfect for cosy sipping sessions at home or at your desk. Simply pop your tea in, add hot water and let the Teamaker take care of the rest! www.t2tea.com

H. SURRENDER SPA PACKAGE

Let go completely. Bring balance to your body and mind with this 75-minute nurturing, aromatic experience. Stress and tension will subside with this facial and relax massage experience. Leave feeling recharged and empowered. www.endotaspa.com.au

I. KNOW THE NIGHT BY MARIA MUTCH

This book is not just a personal memoir about raising a child with multiple disabilities; it also encompasses meditation, the nature of night, the darkness and night waking, even a hint of jazz. A memoir of survival in the small hours – something many of us can relate to. www.booktopia.com.au

J. BEATS WIRELESS ON-EAR CORDLESS HEADPHONES

Why do the kids get to have all the fun with earphones? We can too! Designed to deliver an exceptional listening experience – zone out and listen to your favourite music or latest series on any Apple device. Complete with cushioned ear cups and 40 hours of battery life. Ahhhhh…. www.jbhifi.com.au

ISSUE 18

SUMMER 2018

www.sourcekids.com.au

FOR THE TEACHER A.

WITH SO MANY FREE DOWNLOADABLE TEACHER APPRECIATION LABELS OUT THERE, IT’S TIME TO GET BUSY AND GET CREATIVE!

A. I wouldn’t mind getting my paws into this cookie box, yum!

B. W ho doesn’t love a movie; make B.

a voucher pop pop pop out of a popcorn box.

C. A re there any budding bakers within the school faculty?

D. I ts summertime, fill a tote bag

with some bright goodies and your teacher will drift into beach life before you know it.

E. T urn a simple Target gift card into a thoughtful present with this DIY card.

F. P lant your appreciation via these cute gifts.

G. Y ou can never go wrong with a

WHAT DO WE ALL REALLY WANT FOR CHRISTMAS... JOY, PEACE, HOPE, LOVE, HEALTH AND... SLEEP

bottle of wine in appreciation. Label it up to personalise and bring a smile to your teachers’ face.

STOCKING FILLERS

A. LONG TONGUE CREATURES

RRP $5.00 www.sensorytoystore.com.au

B. KIDS LACEEZ

RRP $14.95 www.laceez.com.au

C. G-TUBE BUTTON PADS

D. E.

RRP from $5.50 www.tubiefun.com

D. INFANTINO VIBRATING GRAPE TEETHER

RRP $52.94 www.fishpond.com.au

E. CHUBES

RRP $21.95 www.thetherapystore.com.au

F. TANGLE RELAX THERAPY

RRP $10.75 www.skillbuilders.com.au

G. ZURU ROBO ALIVE SWIMMING PET

RRP $10.00 www.bigw.com.au

H. SENSORY MASSAGE BALLS

RRP $2.50 www.mydiffability.com.au

G. I.

I. POWERFUL PENDANTS

RRP $15.00 www.ninjababies.com.au ISSUE 18

SUMMER 2018

Make sure your family is

Fire Safety Smart

Learning the basics of fire safety is the first step in fighting fire â&#x20AC;&#x201C; and it just so happens to be the most important. Understanding the best ways to protect your home and family or your business from fire should always be at the top of your to-do list. From selecting smoke alarms, carbon monoxide alarms and fire extinguishers, fire safety 101 begins now.

Visit the Quell website for regular tips and handy hints to protect your home and family this summer. Visit our website www.quell.com.au Like us on Facebook Quell Australia 46

ISSUE 18

SUMMER 2018

www.sourcekids.com.au

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 device. 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.

ISSUE 18

SUMMER 2018

FEATURE

TRANSITIONING YOUR CHILD TO A NEW CLASS

SCHOOL TRANSITIONS:

HOW TO PREPARE YOUR CHILD

ISSUE 18

SUMMER 2018

www.sourcekids.com.au

There are many different transitions involved with schooling, such as beginning primary or high school, changing schools or just returning to school after the summer holidays with a new class and new teachers on the horizon. Even daily school life involves numerous transitions, which all children need support to manage. For children with additional needs who need the familiarity of structure and routine school transitions can be a time of stress and worry.

There are many ways that families can help their child to better manage these events. The following are a selection of general strategies that can be applied to any kind of school transition scenario:

Be prepared Change and transition can lead to feelings of stress for everyone as there is an element of the unknown involved. Build confidence by talking to your child about their new school and what to expect, with this clear communication occurring well in advance.

Go one step at a time Focus on your child’s capabilities and work to build confidence by breaking down tasks at home into simple steps. Discuss with your child’s teacher about how this might also be applied in the classroom.

Develop partnerships Collaborate with schools and health professionals to help ensure the best outcomes for your child’s development and mental health.

Pay the school a visit With children who have a hard time with transitions, visiting the school before the start of the academic year is critical, particularly if it is a new school.

Prepare helpful resources A transition book, filled with photos taken on a school visit, can help your child become familiar with their new environment. You may also wish to help teachers and classmates out by sharing some information about your child. This could take the form of a presentation, a leaflet or booklet, a Q&A session or reading a story about children with similar disabilities. This can shift the focus away from your child while still providing valuable information.

Find out the new routines As early as possible, ask the new teacher or team leader to go over the daily classroom routine so that you can review it and visualise it with your child.

Help create a positive community at your child’s school When children feel connected and a sense of belonging they are more likely to learn and have fun. Helping your child’s school to develop a culture of belonging and inclusion is especially important for children with additional needs. This might involve sharing your child’s particular requirements with the staff or volunteering

Preparing for back to school and transitioning to a new class When preparing for back to school, it is important to focus only on what you can control. For instance, while you may not be able to control how a teacher relates to your child, you can help your child reduce their anxiety and stress by teaching them ways to manage their behaviour and deal with conflict. Here are some ways you can help prepare for returning to the same school in the new year.

Revisit the school environment It’s human nature to feel more comfortable when you know your way around a particular environment. Even if your child is returning to a familiar school, the summer break can feel like a long time. Walking around and looking at visual cues can be really helpful, as can some time on the playground.

Consider your child’s individual needs Talk about school in a casual way over the summer, including sharing stories of your own summers as a child and how you felt about returning to school. This is an opportunity to share what you did and did not like, and you could invite your child to do the same. If there are concerns that feel overwhelming, these are worth sharing with the new teachers. Using similar strategies at home and at school can strengthen your child’s skills and help set them up for success. Share with the school what works for your child at home, and ask for their feedback about what strategies are working at school.

Starting primary school The decision about the best time for your child to start school is an individual one. It can be helpful to discuss this with people who know your child well and also understand the school system. For children who have a developmental delay or disability, their development in certain areas may be different from other children of a similar age. Important things to consider are your child’s: • Capacity to manage and regulate their emotions • Ability to follow instructions • Level of independence • Ability to manage their own belongings • Social skills • Support networks available

From primary to secondary school The sheer size of a high school building can be overwhelming, not to mention the increased number of teachers with different styles and expectations, all the different subjects on offer and the hormonal changes that accompany puberty. The demands on young people, especially those with additional needs, can be

immense. Preparation is the key to a successful transition from primary to secondary school. Here are some simple ways parents can help.

Communicate Talk with your children about the move to secondary school and find out: • What they are worried about • What they are looking forward to • Anything they want their new teachers to know about them • Ideas they have to make the transition easier Note all the information to discuss with teachers on a school visit.

Visit the school Visiting your child’s new secondary school is essential for a successful transition from primary school, preferably more than once. Get a full tour of the school’s facilities including toilets, lockers, the canteen, and pick up and drop off locations. Get hold of a map showing the school’s layout or make a video as you walk around. Introduce your child to non-teaching staff as well as teachers while you are there. Look at a copy of the current timetable to understand what a typical day will be like.

Help with planning and organisation In secondary school, there is an increased expectation for students to take responsibility for planning, such as handing in homework and getting to class on time. With multiple subjects per day, there are also many materials to be managed. Our article on page 30 and 31 has some useful tips on helping children with organisational skills. Also, if your child will need support in this area make sure that it is highlighted on their transition plan.

Prepare a profile of your children for their new teachers Make a one-page information sheet about your children to give to their new teachers, which could include the following kinds of information: • Diagnosis and a summary of how it affects your child • Strengths and weaknesses • Meltdown triggers and possible strategies • Your contact information If possible, hand deliver the information sheet to your children’s teachers at the start of the school year and offer to help and support them in any way you can. At this time, you can discuss practical issues, and anticipate any potential problems and their solutions.

Get to know the key players Meet with the principal, year level leaders and coordinators of learning support programs to work on a transition plan and also to put your support network in place. Find out how you can work together for the best possible outcomes for your child. Make sure you attend parent-teacher conferences to show your commitment and involvement to their education. In all the school transitions you can expect to encounter, it is important to remember that nobody’s perfect. Collaboration and communication, alongside gratitude and appreciation, go a long way in building successful relationships with school staff and helping your child to enjoy their time at school. ISSUE 18

SUMMER 2018

Create a safe sleep space with the Safe Night Net

A place where different abilities are celebrated!

y my diffabilit australia We are an online supplier of therapy equipment, toys and resources for people with different abilities. Our products are carefully selected to assist in the development of skills in a wide range of areas, and are also motivating and engaging for endless fun!

The fully enclosed bed thatâ&#x20AC;&#x2122;s fast, easy and affordable.

Our product categories include: Sensory, Oral Motor, Fidgets, Fine Motor, Gross Motor, Social Skills, Play, Books, Gifts, Communication / Educational, Timers / Schedules... and more!

PO Box 3121, Caroline Springs, VIC 3023

(03) 8456 6613 e. advice@mydiffability.com.au

www.safenightnet.com

ISSUE 18

SUMMER 2018

www.mydiffability.com.au

www.sourcekids.com.au

Beds

From hi-lo to electric, to enclosed and travel systems, this issue we look at a range of the beds on the market suitable for those aged 0 to 100 with a range of needs.

ADIFLEX 220

ADVANTAGE

Life Mobility

Alphacare

Age range: Up to 100 years Weight range: Up to 150kg Height range: NA Width x Length: 94cm x 228cm Wheels: Yes

Age range: 19 to 100 years Weight range: Up to 220kg Height range: Up to 190cm Width x Length: 120cm x 200cm Wheels: Yes

The Accora Floorline2 bed has been designed to reduce the risk of falls and the need for restraint. The Floorbed2 raises to 800mm, which facilitates a safer working height for taller carers. The low head and footboard enable access for care tasks such as hair care and lower limb dressing.

BEDS

GETTING A GOOD NIGHT SLEEP IS IMPORTANT FOR ALL OF US, AS IS MAKING SURE WE ARE COMFORTABLE AND SAFE DURING THE NIGHT.

ACCORA FLOORLINE 2 TYPE E, A & H

PRODUCT REVIEW

TYPE E, A & H

The Adiflex bed has been specially designed to meet the needs of heavy patients. Thanks to its exceptional stability, the adiflex offers patients weighing up to 220kg top safety and comfort with fully adjustable lying surface positions and bed heights.

Age range: 19 to 100 years Weight range: Up to 227kg Height range: Up to 190cm Width x Length: 90cm x 200cm Wheels: Yes

TYPE E, A & H

An electrically operated bed with arched legs that allow a wide stance for clearance and stability. It features back elevation, knee elevation, Trendelenburg action, pendant bed controller and integrated end panel controls. Optional tool-less width expansion system available.

DELUXE HI-LO ADJUSTABLE BED BELLUNO

CS7

Alphacare

DoAbility Kids

Out and About Healthcare

Age range: Up to 100 years TYPE Weight range: Up to 226kg E, A & H Height range: NA Width x Length: 90cm x 219cm, 107cm x 219cm Wheels: Yes

Age range: Up to 100 years TYPE Weight range: Up to 170kg E, A & H Height range: NA Width x Length: Single: 94cm x 203cm King Single: 107cm x 203cm Super King Dual: 214cm x 203cm Wheels: Yes

The Belluno is an economical bed that is suitable for many users. It has the advantage of being easily customisable in size and design. It can also be specified with extra functionality including central braking and mattress compensation.

The Invacare CS7 bed is a truly versatile bed. Lowering to a height of 17cm off the ground, it is a hi-lo bed combined with floor level benefits, making this a completely unique bed, suitable for a variety of users and their specific needs.

Extra low height from floor to top of base is perfect for those with mobility issues, and the bed raises up to a comfortable care level. Various features of the bed include a nightlight and raising and lowering settings for easy care. Add side rails if desired, with different castor styles available.

DINO ADOLESCENT COT

DINO CHILDREN'S COT

Alphacare

Age range: 19 to 100 years Weight range: Up to 220kg Height range: Up to 190cm Width x Length: 120cm x 200cm Wheels: Yes

Age range: 12 to 19 years Weight range: Up to 170kg Height range: Up to 190cm Width x Length: 90cm x 200cm Wheels: Yes

TYPE E, A & H

TYPE E

The Dino Children's Cot features electric height adjustability to allow ease of accessibility, low level positioning, a folding door on one side with timber braces and acrylic windows.

Age range: Up to 11 years Weight range: Up to 135kg Height range: Up to 160cm Width x Length: 90cm x 160cm Wheels: Yes

DOMIFLEX LIE LOW CLASSIC Alphacare TYPE E

The Dino Children's Cot features electric height adjustability to allow ease of accessibility, low level positioning, a folding door on one side with timber braces and acrylic windows.

Age range: 19 to 100 years Weight range: Up to 135kg Height range: Up to 190cm Width x Length: 90cm x 200cm Wheels: Yes

TYPE E

The Domiflex is an economical low bed that raises to the right height. This height range makes it ideal where the user needs the low entry for access or safety but where carers are involved also.

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SUMMER 2018

DREAMA POSITIONING SYSTEM PME GROUP

TYPE NA

ENCORE NURSING CARE BED Alphacare

TYPE E, A & H

ETUDE PLUS

TYPE E, A & H

Think Mobility

Age range: 9 months to 4 years 9 months to adult Height range: NA Width x Length: 56cm x 120cm, 90cm x 190cm Wheels: No

Age range: 19 to 100 years Weight range: Up to 272kg Height range: NA Width x Length: 107cm x 213cm Wheels: Yes

Age range: Up to 100 years Weight range: Up to 180kg Height range: NA Width x Length: 900cm x 207cm Wheels: Yes

Dreama helps provide contoured postural control and continuous positioning comfort throughout the day and night. By supporting at-risk limbs and helping reduce tonal spasms, the Dreama can make a positive contribution towards minimising the risk of muscular skeletal deformity.

The Encore is a premium bed, providing measurably improved levels of care and comfort for the user and better ergonomics and protection from injury for the caregiver

Offers a multitude of optional accessories to cater for a broad range of users. Easy to use release button, no tools required to mount or release wooden side rails.

ICARE333 Leef Independent Living Solutions

GENIE 98 BED SYSTEM

TYPE E, A & H

Medifab Age range: 2 to 100 years Weight range: Up to 150kg Height range: 80 to 185cm Width x Length: 101cm x 185cm Wheels: Yes

The Genie Bed System is for superior nursing care for children and adults where safety needs to be maximised. It provides a generous side height of 98cm.

Alphacare, Astris Lifecare

TYPE E

Age range: 1 to 11 years Weight range: Up to 135kg Height range: Up to 130cm Width x Length: 70cm x 140cm Wheels: Yes An electrically operated cot with height adjustment, head raise and knee break. The steel bed frame features sliding doors with plastic glass on one side, and one fixed side with plastic glass.

ISSUE 18

This bed in fabric or vinyl has all the functions of a hospital bed and more but looks gorgeous, not clinical. Different sizes allow co-sleeping with plenty of space, allowing two independently adjustable beds to fit together safely, or an adjustable and a static bed. Adjustable positioning for specific needs and ultra-low position option in case of falling concerns.

SUMMER 2018

Lightning Mobility

KANGBO ADOLESCENT COT Alphacare, Astris Lifecare

Age range: 3 to 100 years Weight range: Up to 200kg Height range: Up to 190cm Width x Length: 96cm x 215cm Wheels: Yes

NINO SERIES

KANGBO CHILDREN'S COT

TYPE E, A, H & O (Tilt)

TYPE E

Age range: 12 to 19 years Weight range: Up to 170kg Height range: Up to 190cm Width x Length: 90cm x 200cm Wheels: Yes An electrically operated cot with height adjustment, head raise and knee break to meet the changed requirements of and to accommodate the body size of an adult. The steel bed frame features sliding doors with plastic glass on one side, and one fixed side with plastic glass.

TYPE E, A & H

Age range: 1 to 11 years Weight range: Up to 250kg Height range: NA Width x Length: 87cm x 200cm Wheels: Yes The Nino Series allows children to perceive the world around them while at the same time providing protection and security. The transparent perspex merges with the room allowing occupants to have an unrestricted view of their immediate surroundings yet still protects against falls and injuries.

PRACTICO 25/80

TYPE E, A & H

Alphacare Age range: 19 to 100 years Weight range: Up to 220kg Height range: Up to 190cm Width x Length: 90cm x 200cm Wheels: Yes

Comfortable low bed with flexible height between 25 and 80 cm, the Practico 25/80 offers safety and comfort in every position. www.sourcekids.com.au

REXX NURSING CARE Alphacare

TYPE E, A & H

SAFE NIGHT NET Sound Sleep Pty Ltd

TYPE O

(accessory to standard bed)

Age range: 19 to 100 years Weight range: Up to 200kg Height range: Up to 190cm Width x Length: 90cm x 200cm Wheels: Yes

Age range: Up to 25 years Weight range: Up to 100kg Height range: 80 to 190cm Width x Length: 100cm x 199cm Wheels: No

The Rexx bed features precision welded orthopaedic no-sag grid decks that provide robust support. It has components powder-coated individually with flexible polyester antimicrobial finish.

The Safe Night Net fully encloses the IKEA Kura bed with breathable, super-strong mesh (please note that it is not made nor endorsed by IKEA.)

SAFE SURROUND PLUS 135 & 170 Medifab

TYPE E, A & H

Age range: 2 to 100 years Weight range: Up to 150kg Height range: 80 to 185cm Width x Length: 111cm x 215cm Wheels: No The Safe Surround Plus Bed is designed to provide a safe sleeping environment for active people that have the physical ability to stand, with a generous side height of 135cm or 170cm.

THE SAFETY SLEEPER SCANBETA DoAbility Kids, Unique Care

TYPE E, A & H

Age range: 3 to 12 years Weight range: Up to 70kg Height range: NA Width x Length: 70cm x 160cm, 80cm x 180cm Wheels: Yes A safe, configurable bed that changes with your child. Invacare ScanBetaNG paediatric beds are perfect for children aged from 3 to 12 years old.

SLEEPFORM SYSTEM PME GROUP

TYPE NA

Age range: Up to 18 years Weight range: NA Height range: NA Width x Length: NA Wheels: No Sleepform supports the user in a symmetric posture while they are asleep and can be used to reduce the build-up of pressure points. The unique moldable Sleepform mattress has been designed to be unobtrusive in a child’s cot or single bed.

Abrams Nation

TYPE NA

Age range: NA Weight range: NA Height range: NA Width x Length: 92cm x 188cm, 138cm x 188cm Wheels: No Fully enclosed, transportable bed system for special needs families. It may assist children that tend to climb out of a conventional bed. It is made from durable, breathable and washable fabrics and has the option of a side entry on the left or right side. It has a portable frame that disassembles for travel with no tools required and fits within a travel suitcase.

LINKS TO BEDS FEATURED:

UNIQUE CARE KIDS BEDS DoAbility Kids, Unique Care

TYPE E, A & H

Age range: 3 to 12 years Weight range: Up to 200kg Height range: NA Width x Length: 90cm x 194cm, 105cm x 194cm Wheels: Yes

Designed to appeal to children’s imaginations and sense of fun, with colour coordinated powder coating and kid style head boards. Underneath it all, the same high-quality components and reliability as DoAbility’s standard high-low bed.

TYPE: E = Electric, A = Adjustable, H = Hi-Lo, O = Other

www.alphacare.com.au www.leef.com.au www.medifab.com.au www.pmegroup.com.au www.safenightnet.com www.abramsnation.com www.plega.com.au www.lightningmobility.com.au www.doabilitykids.com.au www.pmegroup.com.au www.safenightnet.com www.outandabouthealthcare.com.au www.astrislifecare.com.au www.medifab.com.au www.lifemobility.com.au www.thinkmobility.com.au www.uniquecare.com.au

ISSUE 18

SUMMER 2018

Loveent Do you

the

cont

SomuagraczineeK? ids Sign up now and receive articles, blogs, comps + info EVERY WEEK straight to your inbox.

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Variety – the Children’s Charity help kids who face sickness, disability or disadvantage.

Grants

Variety – the Children’s Charity assists both individuals and the community – including schools, not for profit organisations and community groups - through our grants program.

Programs

We run programs to educate and empower.

Scholarships

We give scholarships to encourage existing talent.

Kids Events

We hold lots of exciting events throughout the year to bring joy to kids in need and their families, who often miss out.

variety.org.au/vic

mybeach by

Plan for summer with Tiralo 2 – the 3-in-1 beach wheelchair

R82

· Waterside access · Sun couch · Floatation device (you actually get wet!)

www.avantinnovations.com.au Phone: +61 2 8315 2834

ISSUE 18

SUMMER 2018

SOURCE KIDS

ACCESSIBLE BEACHES

Beach fun for everyone

Beaches are a cornerstone of Aussie life – we’re blessed with some of the best beaches in the world and with every summer that comes around more and more of them are becoming accessible for the 4 million+ Australians living with a disability. There are a number of key features that make a beach accessible and different spots may have one or all facilities available at different times throughout the year. Beach wheelchairs – including those that float in the water, facilities with bathrooms, showers and changing rooms that can be accessed by wheelchair, wide walkways and matting as well as transport infrastructure and parking are all elements that contribute to a beach’s accessibility. Accessible Beaches Australia is a volunteer-led organisation that has been the driving force behind the growth of beaches offering these facilities. In 2016 they launched their campaign to improve access to beaches around the country, with a target of making most of Australia’s patrolled beaches wheelchair accessible by 2020.

ACCORDING TO THEIR STATS, AUSTRALIA NOW HAS 13 ACTIVE ACCESSIBLE BEACH PATHWAYS WITH 8 PENDING LAUNCH, 37 BEACH WHEELCHAIRS AROUND THE COUNTRY AND 12 MAJOR EVENTS HAPPENING THROUGHOUT THE SUMMER TO CELEBRATE AND ENCOURAGE BEACH ACCESS FOR ALL. 56

ISSUE 18

SUMMER 2018

www.sourcekids.com.au

SO, WITH SUMMER HERE THERE IS NO BETTER TIME TO ENJOY ALL THE FUN THE SAND AND SURF HAS TO OFFER. HERE’S A RUNDOWN OF WHAT YOU CAN FIND AND WHERE.

VICTORIA Victoria is home to Australia’s only two beaches with 24x7 installations of matting.

Williamstown Beach 15 mins west of Melbourne Features 24x7 Accessible Beach Matting Mobi-Chair Beach Wheelchair Accessible Bathroom Accessible Shower Accessible Change Room Accessible Parking

Altona Beach 22 mins west of Melbourne Features 24x7 Accessible Beach Matting Sandcruiser Beach Wheelchair Mobi-Chair Beach Wheelchair Accessible Bathroom Accessible Shower Accessible Change Room Accessible Parking

Mordialloc Beach

Accessible Shower Accessible Change Room Sandcruiser Beach Wheelchair Sandpiper Kids Beach Wheelchair Hippocampe Beach Wheelchair

10 mins south of Melbourne Features Accessible Beach Matting Mobi-Chair Beach Wheelchair Changing Places Accessible Bathroom

Port Melbourne 5 mins south of Melbourne CBD Features Accessible Beach Matting Mobi-Chair Beach Wheelchair

Central Coast of NSW

Features Accessible Beach Matting Floating Beach Wheelchair

Features Accessible Beach Matting

Port Douglas Far North Queensland

Southport

SOUTH AUSTRALIA

Coming soon to the Gold Coast Features Accessible Beach Matting

Coming soon to the Gold Coast

Some of the most beautiful beaches in the world are now accessible:

Accessible Beach Matting

Gold Coast

Mt Martha Beach

Alexandra Headland

Mornington Peninsula

Sunshine Coast

Features Accessible Beach Accessible Bathroom

Features Accessible Beach Matting Accessible Bathroom (SLSC)

Central Coast of NSW Features Lasher Sport Beach Wheelchair

QUEENSLAND Burleigh Heads Beach

Newcastle (Cooks Hill SLSC)

Features Accessible Beach Matting

North Burleigh Heads

Features Accessible Beach Matting Accessible Bathroom Accessible Parking

Avoca Beach

Central Queensland Coast

St Kilda Beach

Features Accessible Beach Matting Accessible Bathroom (SLSC) Accessible Parking Floating Beach Wheelchair Sandcruiser Beach Wheelchair

25 mins south of Melbourne

Hervey Bay

Seacliff Beach Adelaide Beaches Features Mobi-Chair Floating Beach Wheelchair Slat Type Access Platform

Features

Normanville Beach Adelaide Beaches

NEW SOUTH WALES Bondi Beach Eastern Sydney Features Accessible Beach Matting 2 x Sandcruiser Beach Wheelchairs

Ballina Lighthouse Beach Northern Rivers Region Features Accessible Beach Matting

Features Mobi-Chair Floating Beach Wheelchair Slat Type Access Platform Accessiblebeaches.com has more detailed information on each location including useful videos, dates and times of operation and information on how to make bookings for wheelchairs. Visit their site for more details and also to find out how you can help the campaign for more accessible facilities in your area. ISSUE 18

SUMMER 2018

The new standard in therapy for brain-injured children Combining parent education and intensive therapy to unlock children’s potential. CME | TheraSuit | Powerplate | Parent Education

Locations: Adelaide Melbourne • Auckland Sydney • Brisbane Head office: 490 Brighton Road, Brighton SA

To book your free assessment email admin@timmermansmethod.com.au or phone 0411 696 839

Take care of yourself too At MyTime,meet other parents of children with disabilities. Find support from people who really understand. Join today www.mytime.net.au

TOP OF THE CLASS! We know that kids with a disability enjoy active lifestyles and a degree of independence. Whether your child likes getting out and about with family and friends or interacting with peers at school, we have a great range of safe, supportive equipment options to choose from. Contact us for details on our great range of seating, standing, exercise, sleeping and mobility equipment.

www.pmegroup.com.au

PH: 1300 131 884 58

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FEATURE

LIVING WITHOUT A DIAGNOSIS - SWAN

LIVING WITHOUT A DIAGNOSIS: SYNDROMES WITHOUT A NAME BY RACHEL WILLIAMS

THE ADVANCEMENT OF MEDICAL SCIENCE ALLOWS FOR A GREATER UNDERSTANDING OF, AND TREATMENT FOR, DIFFERENT HEALTH CONDITIONS AFFECTING THOUSANDS OF CHILDREN ACROSS AUSTRALIA.

But thousands more still live in limbo – not able to receive a diagnosis. That was the situation facing Heather Renton, whose daughter Rebecca had an undiagnosed genetic condition. So, frustrated by a lack of support, she established Syndromes Without A Name (SWAN) Australia in late 2012. Now she is the Executive Officer of the organisation, which has taken six years to grow enough for her to move from a voluntary capacity. During that time, Rebecca was misdiagnosed twice and the now 12-year-old is confirmed as having FOXP1 syndrome, a neuro developmental disorder. It is estimated around 2400 SWAN children are born each year. Heather says that some receive a diagnosis earlier than others. Some never will. “As Whole Genome Sequencing (WGS) and Whole Exome Sequencing (WES) slowly move into clinical practice, more children will receive a diagnosis,” Heather explains. “It is estimated through Microarray, which is a clinical funded test, around 1520% of children will receive a diagnosis for their genetic condition. With WES it is round 30-50%. “We are learning more about the functions of new genes all the time, so I would predict diagnosis rates to only increase from this point in time. However, the reality is, because of the complexity of the human genome, there will probably always be SWAN families whose children remain undiagnosed.” Heather says that not everyone wants a diagnosis. “And, that is okay,” she assures.

“SOMETIMES IT WILL MAKE NO DIFFERENCE TO THE CARE YOU ARE ALREADY GIVING YOUR CHILD BUT OFTEN A DIAGNOSIS CAN LEAD TO BETTER TREATMENT PLANS, THERAPY INTERVENTIONS AND OUTCOMES FOR YOUR CHILD. “Without a diagnosis, there is an unknown future and you don’t know whether your child’s development and health will progress, plateau or regress and that can be tough on families preparing for the future or thinking about having other children. “A diagnosis can lead to acceptance of behaviours and symptoms. A diagnosis is knowledge and that is empowering. “A diagnosis can also be tough as it is not always the news you want to hear. It can be bitter sweet for families and once again emotions can rise to the surface and your worst fears may become a reality and that can be a really difficult to comprehend.” 60

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YOU DON’T HAVE TO BE ON YOUR OWN AND IT IS OKAY TO ASK FOR HELP. Heather says the resilience of families involved with SWAN is amazing. “All my members are my heroes. I am fortunate that Rebecca’s genetic condition has limited medication implications for her, but some of our SWAN members spend a lot of time in hospital, which is really tough, especially when they have other children to care for and do not know what the future holds for their SWAN children,” Heather says. “It is the SWAN parents who have multiple children with the same undiagnosed or rare genetic condition, and our members who have children with regressing conditions that I find difficult to support at times as I am not a trained counsellor and I wish I personally had the skills to support them at the grass roots level. “The wonderful thing about SWAN is that our parents connect with each other for support and I can assist with connecting parents in similar circumstances to one another.” Heather reports many SWAN families are vulnerable and experience a range of feelings including anxiety, guilt or denial, confusion and ambiguous grief, with many suffering relationship breakdowns as a result. “I often equate being a SWAN family as being in ‘Limbo Land’, an unknown destination full of challenges, uncertainty, frustration, confusion, and isolation,” Heather reveals. “Isolation and navigating and finding supports would be some of our SWAN families’ biggest struggles.” Despite Government efforts to assist families with special needs children, Heather says it has had unintended consequences. “When Rebecca went through Early Childhood Intervention Services, we attended a lot of group sessions so I could form friendships with the other people in the group,” Heather recalls. “The model has changed now where a key support worker and therapists come to your house and support the family. “It is even more isolating since we have moved to an NDIS model. It is a shame as I think parents and carers have limited opportunity to support each other. “I had a SWAN family who attended one of our events say to me ‘I am so thankful for this opportunity, I have not met a single family who had a child with a disability let alone an undiagnosed genetic condition, I have now met three families who I will continue to connect with’.” It’s this type of commentary that fuels Heather’s passion. “We made a conscious decision within SWAN to focus on peer support as that is what we see as important for limiting isolation. Our members get a lot of benefit from attending our events but it saddens me to think there are a lot more potential SWAN members out there who we could be supporting. “We are resource poor so it is challenge to spread the word. I have to remind myself that we are still relatively new in the peer support group space and it takes time to build our community and we are doing the best we can with the limited resources we have.” SWAN has a website and is active on social media. It also has a playgroup, a dad’s group, a mum’s group and is looking to start a grandparent’s group in 2019. It also provides support for people with a rare genetic condition for which there is no active support group in Australia. The best advice Heather can give is to ensure your child is linked with a good paediatrician and have a good family GP. “Utilise the supports of a psychologist, social worker or counsellor if you need extra support,” she says. “Most SWAN families go through a process of grieving for the ‘typical’ child they don’t have. You don’t have to be on your own and it is okay to ask for help. It is a really difficult time when you first find out something is wrong with your child.” And just as a mother swan takes her cygnets under her wing to protect them, Heather says many members of the SWAN family stay connected post a diagnosis. “They have formed close friendships within SWAN and rather than start a group with a handful of people, they remain within SWAN for support,” she says. Everyone swimming against the tide together. For more information visit: www.swanaus.org.au

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FAMILY PROFILE

TUCKER FAMILY

Tucker MEET THE

BY LAURA TUCKER

OUR FAMILY CONSISTS OF: MY HUSBAND GLEN AND I, OUR BEAUTIFUL GIRL IVY AND HER BABY BROTHER AUSTIN. WHERE DO YOU LIVE?: We’re in Malvern East, Melbourne. Fortunately, it’s about halfway between our families and the Royal Children’s Hospital!

WHAT IS YOUR CHILD’S DIAGNOSIS AND HOW DOES IT AFFECT THEM? The umbrella term is Developmental and Epilepsy Encephalopathy, with the affected gene being SCN8a. Ivy endures ongoing seizures, cortical visual impairment, a movement disorder, global developmental delay, is significantly low-tone, nonverbal and has gastrointestinal complications so she is tube fed.

WHAT LED TO THE DIAGNOSIS? I look back on what could only be described as a typical and trouble-free pregnancy and birth. Two days in, Ivy’s infant hearing screening returned as ‘inconclusive’. A month later a follow-up audiology appointment confirmed Ivy had Auditory Neuropathy Spectrum Disorder. Glen and I look back on, and cherish, that first month when we were ‘just’ typical first-time parents. The hearing diagnosis was shattering but ironically Ivy’s hearing has proven to be her best sense. The first seizure came soon after – and our small world collapsed. The initial guess was Leigh’s Disease, a severe infant onset form of mitochondrial disease. This was an intense, confusing and emotional time. We had many more questions than answers and at the same time were trying to carry on as parents of a newborn. In a modern world overflowing with advances in technology driven by the brightest of minds it was hard to comprehend that there were no treatments, let alone a cure. We turned to one another for hope and discovered a great deal of strength and resilience. Two years later we found a precise answer, a mutation in the SCN8a gene, as part of a ‘trio genomic sequencing’. Ivy is one of about 150 children in the world, who all have varying degrees of ability. The diagnosis has changed things dramatically. For Ivy it means more targeted seizure medication and care.

IS YOUR CHILD IN SCHOOL? HOW IS SHE DOING? Ivy attends Malvern Special Needs Playgroup, an 64

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incredible organisation – fortuitously just around the corner from home – that gives her (and us) a genuine sense of inclusion and place in the community. Ivy gets to spend her time with the loving and caring staff and volunteers, and I can plan some respite time with certainty. Walking in each week and seeing her smiling at the music and participating in the activities is pure joy. In another couple of years Ivy will attend school. This will be a significant milestone, as when you are faced with such a diagnosis these sorts of hopes and dreams can fade. We are very excited about Ivy having the chance to spend time in a different environment with the sensory play that she enjoys.

WHAT THERAPIES DOES YOUR CHILD DO? DO YOU HAVE ANY TIPS/TRICKS FOR FITTING THERAPY INTO YOUR LIFE? We’ve only ever known doing everything and anything to realise our child’s potential. That said the appointment and commitment schedule can be relentless so we make sure we group things together where possible and section off a day or two a week to spend time together as a family, even if it’s cuddles on the couch and singing along to Play School’s Greatest Hits. We are motivated by therapies that make Ivy comfortable, draw out her happiness and connect her socially. In between the drama of the day-to-day, I try to multitask and incorporate care as part of the other activities. This is a must when caring for a child with no voluntary movement. When Ivy is in her standing frame, for example, she must be constantly supervised. I use that time to do things such as brushing her teeth and hair and preparing medications while we sing songs and play with her toys.

WHAT CURRENT GOALS DOES YOUR CHILD OR YOUR FAMILY HAVE? Ivy has been on continuous feeds and unable to eat for about a year due to her gut issues. In recent months things have improved and we are hoping to reintroduce tastes and textures of different foods. Ivy has taken to chewing dried mango – it is full of flavour and gives her a chance to use all those new (and sharp) teeth.

WHAT ADVICE WOULD YOU SHARE WITH SOMEONE STARTING OUT ON THE SPECIAL NEEDS JOURNEY? That ‘the darkest hour is just before the dawn’. Things do get easier with time. Looking back, we were surprised at what was almost an instinctive response to adapt and respond to one challenge after another. You must grieve in your own way for the life you thought you would have with your child. While it can be all consuming, it is important to remember that the experience is but one chapter in life – and there is much love and joy to come.

AND WHAT’S THE MOST ANNOYING/ UNHELPFUL/STRANGE ADVICE YOU’VE EVER BEEN GIVEN? You sometimes need that person to stop and listen. Not to respond with ‘don’t worry, it will be OK’, or ‘you should get a second opinion’. Just listen! What’s that famous quote... We have two ears and one mouth so that we can listen twice as much as we speak. www.sourcekids.com.au

AS A FULL-TIME CARER I HAVE A GREAT RESPONSIBILITY TO IVY TO BE THE BEST THAT I CAN BE, AND ROUTINELY TAKING SOME TIME TO RECHARGE AND REFRESH IS A CRUCIAL PART OF THIS.

WHAT DO YOU DO FOR YOU TIME? First of all I never feel guilty for prioritising time for myself, or for Glen and I. As a full-time carer I have a great responsibility to Ivy to be the best that I can be, and routinely taking some time to recharge and refresh is a crucial part of this. For me it’s going for a long walk, stopping for a coffee and diving into a good book. As a couple, going to a restaurant ‘pram-free’ or just to the movies is wonderful.

WHAT ARE YOUR HOPES FOR THE FUTURE? For all people with a disability it’s vital that ‘access and inclusion’ are more than just aspirations. Universal access must be central to urban design, not just a ramp as an afterthought. Genuine inclusion must be more than just a soft path around the perimeter of a tanbark-filled playground, it requires a design-led attitude that fosters real social connectedness. Glen is a local government councillor and is a strong advocate for people with disabilities – channelling his experience with Ivy to bring about community change.

WE WOULD NEVER MANAGE WITHOUT THE FOLLOWING... Products we love: • Cozy headrest • Swimming neck collar • Carrot seat for the car • Homemade sensory board

PEOPLE (OR BUSINESSES) WE LOVE: • Malvern Special Needs Playgroup • Very Special Kids (special mention to Edwina Hargreaves) • Ivy’s complex care team at the Royal Children's Hospital - nurse Sian • Paediatrician Margie Danchin and the Sugar Glider ward at the Royal Children’s Hospital • Starlight Foundation for granting Ivy’s wish to “have fun in Tasmania” • Grandparents Robyn and Michael, Pam and Chris

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Creating a lifetime of opportunities for children with autism At AEIOU Foundation, children with autism aged 2 to 6 receive specialist therapy and care to develop essential life skills that last a lifetime. As a registered provider with the NDIS, we also support families to access the community, through regular workshops and individual planning sessions. Find a centre near you, by visiting www.aeiou.org.au or calling 1300 273 435.

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Cooper Smith is 13 years old and a keen traveller 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

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COOPER'S TRAVELS Sorrento to Queenscliff Ferry I love exploring around Victoria especially as it starts to get warmer for summer. I love trying new foods so the High Tea Brunch on Searoad ferries was perfect! We started in Sorrento on the Mornington Peninsula and travelled across Port Phillip Bay to Queenscliff. It takes just 40 minutes each way. I could use my wheelchair as there is a lift in the boat. My favourite sweet food was the macaron and my favourite savoury food was a small quiche with pearls on the top. Some days you can even spot dolphins and seals. I am looking forward to summer!

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A fitted sheet that you and your child will love! The Wonder Sheet was designed to facilitate your mobility in bed. The unique design can make turning and lifting your child easier because of the satin panel under their hips. Less friction, reducing the risk of skin breakdown and less effort is required from you when re-positioning, reducing any risk of future back injuries.

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Where comfort meets the ultimate in patented Modifier Technology protection to ensure your daughter gets the most out of her day and nothing is in her way!! Modibodi leakproof underwear and swimwear is your daughter’s new best friend, a range that replaces disposable hygiene and offers superior protection for light bladder leaks, menstruation, odour and discharge.

“I bought these for my 12 year old daughter so that I can relax in the knowledge that if her period comes whilst she’s at school she’ll be protected and will have nothing to worry about. She loves how they ﬁt and feel. I am really happy with these fantastic undies! I plan to buy lots more!” - Elisa

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Permobil Koala The chair that grows with you.

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