FREE Issue 8 - Winter 2016
Winter Health • Car Safety • Rett Syndrome • Dancing • Indoor Play
Uncomplicated nutrition, pure and simple.
bellamysorganic.com.au
WINTER 2016
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CONTENTS Features 8
Indoor play features
8 10 12 15
Physio tips: 10 fun ways to improve balance indoors Venturing out – indoor play activities Creating a sensory room Book reviews
16
Car feature
16 Safety in the car 18 Product review – car seats 23 Case study – modified vehicle 27 Top 10 physio tips on how to get in and out of the car
28 Tech-man – in-car technology
30
Sporty kids – dancing as therapy
Welcome
5
36
Products we love
Winter health feature
36 Winter health 37 Drink me! 38 Colds and flus 40 Bring back the colour: banishing the winter blues
46
Regulars 4
Perfectionism… is it debilitating my child?
7
Cooper’s travels
34
Special needs teacher in focus – Michelle Cook
42
Family profile – Young family
44
Rare disease in profile – Rett Syndrome
47
We love...online
48
Directory
50
Competition corner
51
What’s on calendar
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WINTER 2016
Welcome to Source Kids After such a stunning summer, I’m sure most of you are feeling that chill in the air as the cooler months approach. I don’t know about you but I don’t feel like we’ve had an autumn. Where I live we seem to have gone straight from summer to winter and it’s been a rude shock (yes I live in Tassie and it’s a bit more of an adjustment for the Queenslander’s out there – and those from other warmer states!). I really dread this time of year. Being active and heading down to the local park seems to be a long lost memory, as frankly, the thought of rugging the kids up, trudging through the puddles and mud only to have to shadow my SN daughter around the playground so she doesn’t sit in the closest puddle (highly likely) is exhausting. Because I know many parents feel the same, we’ve put together an Indoor Play feature with a bunch of ideas of places to go in winter, physio tips to improve balance indoors at home, plus some great ideas to create amazing sensory spaces for your child in your home. Winter is usually also the time that sickness hits, and this can put our beloved special little people in compromising medical situations. We all know that prevention is key, so this issue we cover the difference between the common cold and influenza, 10 top tips from our Naturopath to keep healthy in winter, healing drinks and banishing the winter blues. I’m sure I sound like an absolute sad sack after my whinging above! There is also plenty to love about winter like being cuddled up with the kids under a blanket on the couch watching movies. Until next time, make yourself a hot chocolate or a cup of soup and enjoy a great read in our winter issue.
Emma Price Publisher
Source Kids CDSA PO Box 5279 Launceston TAS 7250 Phone: 03 6327 1995 ABN: 66 434 598 812 Web: www.sourcekids.com.au
Editorial Editor: Marie-Louise Willis Writers: Marie-Louise Willis and Rachel Williams Contributors: Emma Price, Cooper Smith, Debbie Evans, Sonya Tzerefos, Zalia Powell, Jane Brooksbank, Michael Young and Tanya Curtis.
Send all letters and submissions to: Source Kids, PO Box 5279 Launceston TAS 7250 or email editor@sourcekids.com.au Editorial enquiries: 03 6327 1995
Advertising & Marketing Naomi Sirianni For advertising enquires please call 0447 755 043 or email advertising@sourcekids.com.au Graphic design Imogen Brown Publisher Emma Price
F L Y I N G
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 Source Kids is distributed through therapy centres, hospitals, paediatricians, special needs schools and early intervention centres. For distribution enquires, contact info@sourcekids.com.au
C O L O U R S P R I N T I N G
Front Cover: Deena Nicholas Photography in Melbourne captured a gorgeous and fun winter wonderland. Email: dnphotography@bigpond.com Phone: 0481 701 232 Facebook: Deena Nicholas Photography
Our model for this Winter issue is the vibrant four-year-old Sophie Smith. Sophie suffered a life threatening trauma to the brain at six months of age and as a result has an acquired brain injury. She works so hard through early intervention programs and loves nothing more than to dress up and prance about like the ballerina we all think she is! Sophie is an absolute delight to be around; with a smile and personality that is capable of melting snowflakes!
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one of two sets featuring A3 prints of both the ‘Three Strikes’ and ‘Absolutely Awesome’. Enter online at www.sourcekids.com.au/competitions
Sprout and Sparrow: Art prints for little people an EZPZ Happy Mat in your choice of colour valued at $36.95. Enter online at www.sourcekids.com.au/competitions
EZPZ Mats The EZPZ Mats are an all-in-one placemat and bowl or plate that captures kids’ messes. The mats suction directly to the table or other surface, making it nearly impossible for tiny hands to tip over. There are three great styles – the happy mat, happy bowl and mini mat and they come in three great colours. All of the mats are dishwasher, microwave and oven safe, are 100% silicone and are also BPA, PVC and Phthlate free! Available at www.childrensdisabilityproducts.com.au
iRiNGO These new-to-Australia iRiNGO blocks can be used to build rigid 3D structures as well as creations with moveable joints. The joints have flexible angle adjustment and 180 degree rotation. Transformable creations click as they are changed into new designs. There are a range of packs available including the bulldozer, motorcycle, safari world, transformer and combination packs. The iRiNGO range is exclusive to Windmill Educational Toys & Equipment and is great for both boys and girls aged 5 to 12. Available at www.windmill.net.au one of two sets of iRiNGO including the safari world (204 pieces) valued at $96.95 and the motorcycle set (131 pieces) valued at $69.95. Enter online at www.sourcekids.com.au/ competitions
Sprout and Sparrow was born after sister duo Tash and Adi spent hours scouring shops and the internet to find the perfect piece of art for their little ones’ bedrooms. They didn’t want to spend a lot of money, they just wanted to find something a little bit different, bold and colourful. Nothing really grabbed them. In a brief moment of calm during a play date one morning, they came up with an idea over a pot of peppermint tea: let’s make our own art! Sprout and Sparrow create wall art that brings colour and life into children’s bedrooms, playrooms and nurseries. All products are designed and printed in Melbourne, Australia. Featuring bold, colourful and contemporary designs, the wall art prints, plywood blocks and an extensive range of greeting cards and gift tags, are playful and fun. Available at www.sproutandsparrow.com.au
Pendo Pad 10 The Pendo Pad tablet is powered by the Android Lollipop operating system, allowing you to customise your experience with thousands of apps available through the Google Play store. Its compact design means you can easily take all of your favourite photos, videos, games and more on the go for a fraction of the price of other tablets! The Pendo Pad features a 10.1” HD touchscreen, 16MB storage and 1GB RAM, 0.3MP front facing and 2MP rear camera, FM radio, 1.3 GHz quad core processor and GPS/Bluetooth 4.0//Micro USB and MicroSD input that supports up to 32GB. Go in the draw to WIN a Pendo Pad tablet valued at $99 by entering online at www.sourcekids.com.au/competitions
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WINTER 2016
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ADVERTISEMENT Sitting, waiting, contemplating and worrying are quite familiar activities to many parents and caregivers navigating the world of disability, and we are certainly no exception. Through the daily challenges and many months of sitting waiting, contemplating and worrying, two Brisbane mums have created a very special and unique service, Ruby & Ollie’s All Abilities Childcare. This is no ordinary childcare service, but one which offers an all-inclusive, fully supported & resourced day care program to all children, irrespective of their differing abilities. We encourage siblings to attend together and celebrate together their own abilities and uniqueness. Six-year-old Ruby and four-year-old Ollie are who radiate at the heart of this service. Mothers of Ruby and Ollie, Rebecca and Leah have made it their mission to see that all children have access to childcare where they gain a sense of belonging, not only for the child who has extra challenges, but siblings and the family as a whole. With specialised equipment, a beautiful sensory garden, qualified educators, relevant resources, a tailored curriculum program and a big pinch of love and compassion, it is our upmost priority to provide families with a sense of security and belonging. We believe that inclusive childcare is imperative for all children. There are many physical, emotional, mental and social benefits for children from children playing and being educated in a holistic learning environment. In addition to the childcare component of Ruby & Ollies our service provides families access to a range of different therapists that are located on our premises. Therapies on offer include; Physiotherapy, Occupational Therapy, Speech Therapy, Art and Music Therapy. Ruby & Ollie’s will be opening at the end of May 2016 at Alexandra Hills, Qld and we look forward to sharing this journey with you. For further information: Rebecca Glover: Rebecca@rubyandollies.com.au
Cooper’s
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TRAVELS
We are excited to introduce our newest columnist, Cooper Smith. Cooper is 11 years old and a keen traveller and foodie. Cooper uses a manual wheelchair while he travels, as he has Dystonic Quadriplegia Cerebral Palsy. This year he will explore Japan, Sri Lanka and Bali, and looks forward to sharing more of his adventures with you in future issues of Source Kids. You can see more of his adventures on Instagram @thewheelfoodie. My favourite thing about traveling and exploring new places is getting to try new foods. I love exploring new places to eat while wheeling down the streets in Asia. The best place to eat is right on the street. Pick a place the locals are enjoying and you know it will be amazing.
Vietnam: I backpacked from South to North over a month and I loved sitting on the little chairs out in the street watching all the people. I love beef pho with fresh rice noodles. When I was in Hoi An I tried food I had never seen before and I didn’t even know what it was. Cambodia: In Siem Reap there are so many places you can go to try new foods. Pub Street is popular and you can try the national dish called Fish Amok. My favourite memory was the roadside picnic where I ate crickets and frogs with new friends. We sat on the side of the highway on a picnic rug.
My top five picks for Street Food in Asia:
Bali: I loved a dish called Babi Guling. It is a fresh baby pig. It is so good, I tried it in five different spots!
Penang: Is my top pick for food! It is my favourite because it mixes the different cultures of Chinese, Indian and Malay. I love Nasi Lemak, which is made up of rice, sambal, peanuts and egg, and is served in a banana leaf. It is best tried with some fresh roti.
Bangkok: There is so much to choose from in this city. I liked the curries and the amazing fresh fruit juices on the side of the road. The most well-known dish is Pad Thai, which I really like as the noodles are fresh and there is so much flavour.
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WINTER 2016
INDOOR PLAY Feature
INDOOR
Play Feature We’re sure most parents feel a little cooped up over winter with the weather cold and wet outdoors - never mind how our kids feel! So we’ve put together this feature to give you some great ideas to continue to keep the kids active and entertained indoors over the next few months!
Physio tips: 10 fun ways to improve balance indoors Presumably if this article headline has caught your eye, then terms like clumsy, accident prone, and awkward also spring to mind. Good balance and coordination is not genetic; it is the culmination of many factors, starting from gaining head and trunk control in conjunction with visual control (coordinating eye movements, being able to stare at and track moving objects) and righting reactions (maintaining your head in the midline as your body moves) to developing body awareness (knowing where you and your limbs are in space and precisely judging movement patterns to perform various activities), spatial awareness (knowing how much space you need) and of course having the postural strength and endurance to maintain a stable trunk and head to not slip, trip or fall down when challenged. These factors are trainable.
Our sensory systems (visual, vestibular, touch and pressure) play a major role in the development and maturation of ability to maintain our balance in all environments and across a variety of tasks from sitting at a table to running, kicking balls or riding a bike. So logically the activities to improve our balance need to stimulate these senses and improve our postural strength and endurance, and limb sense awareness. Depending on the age and development of your child these activities can be performed in sitting, kneeling, standing, or, to really push the envelope or to challenge other members of the household, standing on one leg. 1. Balloon play: chasing the balloon, keeping it up off the ground (less likely to break windows than a ball!) Enhances: visual tracking and perception, righting/ equilibrium and protective reactions, motor planning, spatial awareness and postural control 2. Obstacle courses: cushions on the floor, tunnels through the chairs or under the table or your legs, swimming noodles, to walk, crawl, roll through Enhances: visual perception, motor planning, righting/equilibrium and protective reactions, spatial awareness, strength and control 3. Dancing or Ninja turtle moves: +/- weapons – two cardboard rolls from the kitchen paper towel held together with cord make an excellent set of nunchucks to fight imaginary ‘bad guys’. Enhances: motor planning, righting/equilibrium and protective reactions, spatial awareness, strength and control
Teach Me How specialises in supplying schools and families with special needs and educational toys and resources. Readily available and reasonably priced therapy aids, toys, special needs resources: t 4PDJBM 4UPSJFT t 8FJHIUFE 1SPEVDUT t &EVDBUJPOBM 5PZT t (SPTT .PUPS &RVJQNFOU t 4MFFQJOH "JET t 5JNF 5JNFST t &BSNVòT t 4FOTPSZ *OUFHSBUJPO 5PPMT
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WINTER 2016
4. Twister: the goal is to make your way across the mat and can therefore be an individual activity, add in elbows and knees to promote more body awareness Enhances: motor planning, righting/equilibrium and protective reactions, spatial awareness, joint and body sense awareness, postural strength and control 5. Simon says: using a range of movements Enhances: motor planning, righting/equilibrium reactions, spatial awareness, joint and body sense awareness, postural strength and control 6. Freeze: with or without music Enhances: righting/equilibrium reactions, spatial awareness, joint and body sense awareness, postural strength and control 7. Animal poses: make up certain poses and name them your favourite animals and then randomly call them out – progression from twister and freeze Enhances: motor planning, righting/equilibrium and protective reactions, spatial awareness, joint and body sense awareness, postural strength and control
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9. Stomping on a squeaker toy (pet toys are ideal): can be carried out in sitting, kneeling or standing – it is harder to quickly stomp and return foot to starting position than to stomp down hard on the toy – but that is more fun! Enhances: motor planning, righting/equilibrium and protective reactions, spatial awareness, joint and body sense awareness, postural strength and control, also involves visual perception 10 Rocking horse/horsey rides: on your legs or the arm rest of the couch Enhances: righting/equilibrium reactions, postural strength and control Have fun and here’s to less Dettol and Bandaids next summer! Jane Brooksbank – Senior Physiotherapist Movement Solutions www.movementsolutions.com.au
8. Skittles: vary your starting position – from sitting, kneeling, standing, squatting/lunging to lunging on one leg Enhances: motor planning, righting/ equilibrium and protective reactions, spatial awareness, joint and body sense awareness, postural strength and control, also involves visual perception
Reach & Match ® - Inclusive Education Kit empowers children with all abilities
Reach & Match® empowers children with sensory impairment and multiple needs in mainstream settings. It includes 30 play-based activities for all children to develop literacy and acquire early concepts of space and positional play, motor, communication and social skills.
www.reachandmatch.com facebook.com/reachandmatch info@reachandmatch.com youtube.com/user/reachandmatch instagram.com/reachandmatch/ Phone: 03 8819 0867
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WINTER 2016
INDOOR PLAY Feature
VENTURING OUT – indoor play activities As the days grow colder and darker and winter draws in, it is tempting to crank up the heater and snuggle up indoors. While home days are great fun, and we have all sorts of brilliant ideas in this feature on things you can do inside to keep everyone entertained, sometimes it is really great to expand your horizons and enjoy all the indoor play your town or city has to offer.
Indoor play centres This is the perfect time to explore the play centres in your area. Ring up in advance to see whether your local centre has any provisions for special needs children.
Museums Museums are such a great place to take children for an indoor outing that won’t cost a fortune and will keep them entertained and out of the house for most of the day, if that’s what you’d like. Check out your local museum/s to see what they have to offer over the holidays.
Ten pin bowling The bowling alley is a great place to get everyone to use up some energy and a really accessible activity as the ramps that most centres have available mean that as long as your child can push the ball along the ramp (even if it’s only softly) they can participate.
Library If you haven’t been to a library since your school days and are haunted by memories of shushing librarians, imagining there is no way your child could ever be welcomed in such a calm, quiet, scholarly place; it is time to think again. Libraries have become much more welcoming, child-focused and inclusive spaces, filled with couches and squishy beanbags to curl up on, giant mats for music and story time, plenty of computers if you’d like some internet time, craft days and all sorts of great workshops for kids (and adults). Our local library even teaches coding and robotics. Obviously, there are still masses of books you can borrow, as well as CDs, DVDs, magazines and even toys. Your local library will have lots planned over the school holidays for your children to enjoy so have a look online - and the best bit is that it’s all free.
Indoor swimming pools Making sure your children have the opportunity to exercise during winter is a great start to helping them stay healthy. Your local indoor aquatic centre will be running lessons but you should also be able to go in for some general swimming time and wear everyone out.
WINTER 2016
Aquarium I have to admit, this is one of our favourites. There is so much to see and do, plenty of activities for the NT siblings and the underwater tunnel and jellyfish experience at our aquarium is just like a massive sensory room. It is also extremely accessible and has a little indoor playground off the cafeteria for some great downtime in between exhibits.
Movies There is nothing quite like escaping to the magic of the big screen, especially when it is cold and blustery outside. Often children with special needs (and their parents) find the cinema a challenging experience, which is why Chanelle Avison, a mum of twins with ASDs, began running sensory movie days over four years ago and they have expanded to locations throughout Queensland and NSW. All children are welcomed and the lighting is on dim, the sound is lowered and the fire doors are monitored by volunteers for the escape artists. Movies run on the first Sunday of every month at the 11am session and tickets are $8. Go to www. facebook.com/SensoryMovieDay for locations and more details.
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a Family Pass to Sea Life Mooloolaba Enter online at www.sourcekids.com.au/ competitions
SEA LIFE Mooloolaba is an all-weather visitor attraction located in the heart of the Sunshine Coast and now has more creatures to see and things to do than ever before. At the much loved aquarium you can learn, explore and interact with thousands of marine life over 16 amazing and unique zones. With 14 fun talks and animal feeds, including the family favourite seal presentation, there’s plenty for everyone to enjoy at SEA LIFE Mooloolaba including cage free shark dives and snorkels.
PLUS! The Ultimate Octonauts Experience! Enter the amazing world of the Octonauts and play your part helping the crew on brand new underwater missions! EXPLORE a mysterious cave with Captain Barnacles and discover the creatures that live there, help Kwazii RESCUE a runaway crab while searching for hidden treasure, and PROTECT coral reef creatures with Peso. Then step on board the Gup-E for an unforgettable photo opportunity! Sound the Octo-Alert!
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WINTER 2016
INDOOR PLAY Feature
Creating a
SENSORY ROOM
Having a sensory room in your own home is a great way to provide your child with the sensory information they require to help them regulate and manage the world around them.
profile is different: so it is worth chatting with your child’s OT to work out exactly the kind of equipment that will best suit them. They will also be able to help you with ideas on how to use it best, for the best possible results.
The idea of a sensory room is to deliver sensory information, to relax and calm, while engaging the person so they are able to react to their environment. While there is a lot of equipment that is fairly generic and that most people will enjoy and benefit from, each child’s sensory
If you start googling sensory rooms, you will be led down the most incredible path of amazing equipment that could make you feel as if it is a project out of the reach of an ordinary family’s budget. Do not be disheartened. While there are amazing products you can buy if you have some spare funding or a wealthy godparent looking for a gift
Suppliers of educational equipment, toys and resources for special needs, primary school, pre-school and playgroups.
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591 Whitehorse Road, Mont Albert VIC 3127 (03) 9830 4336
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256 Charles Street, Launceston TAS 7250 (03) 6334 9996
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idea, there are also plenty of budget options and things you can make yourself that will still work just as well. And don’t be put off by the idea that it needs to be a sensory ‘room’. A sensory corner, or cupboard, or tent are all good options, too. What to include: Once you’ve chosen the space you’d like to use, you can begin to fill it. Obviously the equipment you choose will depend on how much space you have. Luckily, quite a lot of equipment can be used for a number of senses simultaneously. It is important to include equipment to cater to all seven senses – the usual five as well as vestibular and proprioception.
Visual (sight) Visual input can be overwhelming and/or distracting for a child with sensory issues, or, alternatively, it can ‘wake up’ a child who has difficulty finding the interest to track visually. The idea is to darken the sensory room and make sure there is no clutter to cut out unnecessary/distracting visual input. You then choose the items and lights to create the optimal visual environment. Some of the most exciting (and expensive) equipment falls into the lighting category and you can go nuts but you can also achieve a brilliant effect by using Christmas lights and Kmart light shows. Equipment to engage/calm the vestibular system includes: đƫƫ %û!.!*0ƫ +(+1.! ƫ(%#$0ƫ/+1. !/ƫĨ) '!ƫ/1.!ƫ0$!5ƫ .!*Ě0ƫ fluorescent) including:
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Auditory (hearing) Setting the scene with calming or invigorating music and sound is an important element of creating the right sensory environment. Equipment to engage/calm the auditory system includes: đƫƫ 1/% ƫġƫ*!3ƫ #!ƫ+.ƫ ( //% (ƫ)1/% ƫ/!!)ƫ0+ƫ3+.'ƫ !/0ċƫ There are masses of compilations available on YouTube đƫ $%0!ƫ*+%/! đƫ %* ƫ $%)!/ đƫ %*#%*#ƫ +3(/
Olfactory (smell) Smell is a powerful sense that is often overlooked but can easily be utilised to calm or invigorate. Aromatherapy utilises plant essences to powerful effect: lavender and vanilla are calming while cinnamon and grapefruit are invigorating. Equipment to engage/calm the olfactory system includes:
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Ph: 0448 316 319 www.nacre.com.au Cathy Love is an occupational therapist, coach, speaker and author. She works with children, parents and disability service providers to achieve brilliant outcomes for children with special needs.
Brisbane’s only exclusively child focused Podiatry Clinic and Shoe Shop
Family service coach – working with parents to set goals, design great programmes, maximise funding options and coordinate the team around your child. Clinical supervision and workshops for therapists or teams, face to face or virtual. Specialist occupational therapy services for Melbourne children and teens. Sensory processing, self regulation, executive function, motor development and handwriting. Skype consults possible. Paediatric Private Practice Business Coaching – for those wanting to improve their business.
• flat feet • hypermobility • toe walking • delayed gross motor skills • tripping & falling • intoeing • gait assessment and much more
Visit us at www.littlebigfeet.com.au or www.littlebigshoes.com.au Ph 3378 5935 – 6/2069 Moggill Rd, KenMoRe (Parking in Princeton St)
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WINTER 2016
INDOOR PLAY Feature
Tactile (touch)
Proprioception
When creating tactile walls and floors you are only limited by your imagination. While these are items you can buy, you can most definitely make them yourself.
Proprioceptive input (sensations from joints, muscles and connective tissues that underlie body awareness) can be obtained by lifting, pushing, and pulling heavy objects, including one’s own weight. A child can also stimulate the proprioceptive sense by engaging in activities that push joints together like pushing something heavy or pull joints apart like hanging from monkey bars.
Equipment to engage/calm the tactile system includes: đƫƫ 0%(!ƫ3 ((čƫ1/!ƫ ƫ)%4ƫ+"ƫ.+1#$Čƫ/ . 0 $5Čƫ/+"0ƫ * ƫ0% '(5ƫ textures made from fabric offcuts, carpet/flooring samples, kitchen cleaning equipment (scourers, brushes, rubber gloves), feathers, wool, pipe cleaners, shells, rocks. These can be stuck to a piece of plywood to mount on the wall. You can paint the plywood with some glow in the dark paint.
Equipment to engage/calm the vestibular system includes: đƫ +((%*#ƫ) $%*!/ đƫ * ++.ƫ,( 5ƫ !*0.!/ƫ0$ 0ƫ$ 2!ƫ.%*#/ƫ0+ƫ$ *#ƫ".+)
đƫƫ '!ƫ ƫ, 0 $3+.'ƫ+"ƫ %û!.!*0ƫ .,!0ƫ * ƫý++.%*#ƫ surfaces (including Astroturf, lino, tile, carpet and sisal).
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Items to lick and chew engage the oral motor sense.
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Equipment to engage/calm the oral motor system includes:
Vestibular
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The vestibular system manages how we relate in space and govern balance and the ability to coordinate and manage our bodies. Equipment to engage/calm the vestibular system includes: đƫƫ 3%*#/ƫĢƫ ((ƫ/3%*#/ƫ .!ƫ#.! 0ƫ 10ƫ%"ƫ5+1ƫ$ 2!ƫ/+)!ƫ equipment funding it is worth having a look at a platform swing – one that moves on one plane đƫ -1%,)!*0ƫ0$ 0ƫ.+ '/ĥ,.+2% !/ƫ ƫ.+ '%*#ƫ/!*/ 0%+* đƫ ! % %*!ƫ ((/ đƫ ))+ '/
WINTER 2016
Book Review
SIMPLE LOW-COST GAMES AND ACTIVITIES FOR SENSORIMOTOR LEARNING A Sourcebook of Ideas for Young Children Including Those with Autism, ADHD, Sensory Processing Disorder, and Other Learning Differences Written by: Lisa A. Kurtz Published by: JKP This practical sourcebook is packed full of fun, low-cost games and activities that encourage the development of motor skills, coordination and sensory tolerance in young children. Using materials that are readily-available in most households or that can be purchased or homemade at a very low cost, these games and activities are appropriate for all children, including those with autism, ADHD,
MULTISENSORY ROOMS AND ENVIRONMENTS Controlled Sensory Experiences for People with Profound and Multiple Disabilities Written by: Susan Fowler Published by: JKP This unique, fully photocopiable resource offers guidance and materials to aid those developing multisensory environments - artificially engineered spaces that encourage relaxation, social skills and learning by stimulating the five senses. Particularly useful for those working with people with multiple disabilities, this resource explains the theory underlying multisensory environments, describes the different types, and outlines the practicalities of planning, setting up and equipping a multisensory space. The resource also features useful checklists and tools for creating multisensory experiences in both designed and everyday settings, such as the kitchen, bathroom, garden or beach. Multisensory Environments is published using photocopyfriendly lay-flat binding and is an essential tool for any professional working with individuals with multiple disabilities. We have THREE copies to give away! Enter at www.sourcekids.com.au/competitions
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Sensory Processing Disorder, and other learning challenges. The book includes clear descriptions of how to carry out each activity, helpful illustrations, and ways to adapt activities according to the child’s individual needs. In addition, a comprehensive reference guide to the activities enables easy searching for games suited to the development of particular skills. This sourcebook is the key to easy-to-understand, lowcost, and effective games and activities that will support the development of sensorimotor skills. It is a useful tool for parents, carers, therapists, and teachers of children with or without special needs. We have THREE copies to give away! Enter at www.sourcekids.com.au/competitions
FREE TO BE ME A Roadmap To Rediscovering A Child’s World Without Sensory Sensitivity Written by: Hannah Gamble Published by: Spectrum Journeys Inc. Parents, teachers and therapists are always looking for information to support their child/ students/clients to achieve their best. Sometimes sensory processing difficulties get in the way of daily life and stop the child from participating in activities they want or need to learn. Sensory processing problems are not always recognised by professionals and it’s the parents and teachers who may flag their concerns. Identifying the possible reason/s for behaviours is just part of the journey. Knowing what to do next and finding useful and practical strategies are what makes the journey worth travelling, as something can be done about it. (Note – Strategies need to be individually designed with the child’s treating occupational therapist). This book provides sensory tools for parents, teachers and therapists to consider when developing sensory strategies to facilitate participation in daily life. We have ONE signed copy to give away! Enter at www.sourcekids.com.au/competitions
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WINTER 2016
CAR Feature
SAFETY in the car When transporting children with special needs, special care needs to be taken. Children with special needs often have additional car safety requirements, whether physical or behavioural, which means that additional equipment and attention is required beyond the current government legislation. As your child grows in size it is important to update their seat. The current laws state that: Up to six months: Your baby must be restrained in an approved rearward-facing child restraint such as an infant capsule or a convertible car seat specially designed for newborn babies. From six months to four years old: Your child must be in either a rearward-facing or forward-facing child restraint, such as a child safety seat. From four years old to seven years old: Your child must be in either a forward-facing child restraint or a booster seat restrained by a correctly adjusted and fastened seatbelt or child safety harness. From seven years old to 16 years old: Your child must use a booster seat or a seatbelt properly adjusted and fastened. Standard infant and toddler seats are usually more than adequate for babies and younger children with special needs and it is usually only once children have outgrown the standard sized seating that the need for special adaptive equipment becomes necessary. Standard infant seats that recline are fantastic for children with special needs – even for those with respiratory issues. While currently it is only required for infants to be rear facing up until six months, it is a great idea to use the seat rear facing for as long as possible. Rear-facing, the seat provides much more support, in case of an accident, or even just with the constant motion of the car, for children with weak neck control and core strength. If your child’s head tilts forward in the rear facing seat because it isn’t tilted far enough, you can add a wedge by using a rolled up towel at the crease of the car (at your child’s feet) up to an angle of 45 degrees (just check with the guidelines of your seat’s manufacturers). Car seats provide more than just a safe seating position – they also keep children with additional support needs well supported and they can help to keep children with impulse control issues appropriately seated whilst in the car. For
this reason, most standard mainstream booster seats aren’t really adequate but there are a few on the market that still provide the five point harness car seat style safety and support in a size to fit up to a 10 year old. Alternatively there are harnesses available that you can add on the booster seats that can provide the extra support and security your child may require. You can also purchase a seat belt buckle guard that will protect the buckle from being opened unless a key-shaped item is inserted into the plastic guard. If you do decide to use one, you need to remember to have a seat belt cutter easily available so emergency workers can release the seat belt if necessary. There are also a number of seats on the market available specifically for children with special needs. Some of these have swivel bases, which are particularly useful for larger children who are unable to self-transfer. If your child is in a wheelchair and too heavy to lift into the car, you may need to think about an adaptive vehicle, where the floor is lowered and the chair tethered to the base of the vehicle, so that your child can remain in their chair. There are a number of vehicles on the market that are able to be adapted, and companies that are able to carry out the adaptions for you.
NOTE: Check with the road authority in your state to make sure you are compliant. Rear facing seats must never be used in the front seat of the car due to the air bags. It’s a really good idea to have your car seat installation checked by a professional. The Roadside Assistance Company in your state will be able to help you with this. You need to ensure car seats pass the Australian safety standards! Only purchase from an Australian supplier. Never use a car seat if it has been in a car that has been involved in a serious accident. It isn’t advisable to purchase a second-hand car seat. If you do, take great care to check the wear and tear, latches, fastening straps and ensure it hasn’t been involved in a car accident. The RACQ advises you don’t use a car seat older than 10 years. You can check the date it was manufactured on the seat.
WINTER 2016
Car safety tips: Have a car safety care plan in place for your child in case a medical emergency occurs while you are driving. Make sure you have a tag listing your child’s diagnosis and any major points emergency care workers will need to know if you are unable to assist them in the case of an accident. Things to list include: đƫƫ +))1*% 0%+*ƫ %(%0%!/ƫĨ!ċ#ċƫ*+*ġ2!. (Čƫ/%#*ƫ language, PODD) đƫƫ ! % 0%+*/ƫĨ0%)!/Čƫ-1 *0%0%!/ƫ * ƫ$+3ƫ0+ƫ )%*%/0!.ĩ đƫƫ !! %*#ƫ.!-1%.!)!*0/ƫĨ ((!.#%!/Čƫ ƫ !0 %(/ĩ đƫƫ ! % 0.% % *Ě/ƫ* )!ƫ * ƫ,$+*!ƫ*1) !. After writing this little piece of advice I was suddenly chronically aware that I was driving around without all this essential information easily available for emergency workers to access. A minor spot of anxiety later – mainly regarding how I could do it easily, what would work, and how I could store it so that it could be seen but not eaten by my daughter - and we are all sorted. The Cheeky Echidna Emergency Information Wrap, which was designed by a mum who has a son with special needs, does the job perfectly. She says: “I worried what would happen if we were in an accident and I was injured. How would anyone know how to help my son, who is still learning to communicate? I wanted something that could provide some information to first responders, so they could help my son effectively. The wrap can communicate for you when you can’t and can provide useful information to first responders so they can quickly and effectively help your child if you are in an accident. There is space on the card to provide information on blood type, medications, medical conditions, emergency contact numbers – I even have my son’s favourite food and song to calm him listed on his! The card can be removed and taken with the patient to hospital so they too have all the information required.” The wrap attaches with Velcro so can be moved and used on a bag or backpack, or even on wheelchair or pram straps. Emergency Information Wraps and cards can be purchased from www.cheekyechidna.com.au
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one of two large packs including a Emergency Info Wrap, Emergency Info Card and a Removable Alert car tag valued at $35 each (one pack is for autism the other special needs), or one of four small packs containing a removable alert car tag and an emergency info card valued at $20 each (two packs are for autism the other two special needs). Enter online at www.sourcekids.com.au/competitions
Remember to safely stow all strollers, walkers and wheelchairs in the boot of the car while driving to prevent them from injuring passengers if there is an accident. The RACQ recently conducted a Temperature in Cars survey*, which made several important findings that show the dangers of leaving children unattended in cars, even for a short time. They conducted a variety of tests on temperatures inside parked cars and concluded that ‘there is no safe situation in which to leave children unattended in a vehicle’. Many children with special needs find it difficult to regulate their body temperature and are even more at risk of dehydration and/or serious medical complications from overheating. *go to www. http://www.racq.com.au/cars-anddriving/safety-on-the-road/driving-with-children/ dangers-of-leaving-children-in-cars for the full report.
Cozy Dozee The Cozy Dozee offers comfort while travelling in the car and helps correct neck alignment when your child falls asleep in transit! The Cozy Dozee’s head support is perfect for children with additional needs with no more worrying about floppy heads and sore necks! This product is tested to Australian standards and loved by Physios, Chiros and OTs. Available from www.cozydozee.com one of three customised packs containing a Cozy Dozee (choice of size and gender) plus Cozy Dozee car air fresheners valued at $50 each. Enter online at www.sourcekids.com.au/competitions
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WINTER 2016
CAR Feature
CAR SEATS
Product review
Car seats. You can’t leave the hospital with your brand-new baby without one but as our children with special needs grow, often the standard issue booster just isn’t enough. We have gathered together the best larger car seats and boosters on the market, four made specifically for the special needs market and three that the mainstream companies are producing, so you can compare and see what will best suit your family.
The ‘Specifically for the Special Needs Market’ seats: Medifab
Carrot Car Seat 3000 Price: POA For: Ages 3-15yrs User weight: 15-36kg A comprehensive special needs restraint/booster system for children up to 36kgs, providing various kinds of extension accessories and multi-adjustable features to allow longer use during the child’s life and to suit the wide spectrum of children’s needs. Designed, engineered and built to provide optimal positioning and safety for children with insufficient head, trunk, and pelvic stability. Ä‘ĆŤ 1#!ĆŤ#.+30$ĆŤ0+ĆŤ/1%0ĆŤ%*" *0/ĆŤ0+ĆŤ+( !.ĆŤ $%( .!*ĆŤ Ä‘ĆŤĆŤ *#(!ĆŤ * ĆŤ !,0$ĆŤ &1/0 (!ĆŤ/! 0ĆŤ * ĆŤ '.!/0ÄŒĆŤ2 .%+1/ĆŤ kinds of cushions and pads make precise and delicate fitting possible
Carrot XL Price: POA For: Older children and adults User Weight: 36-75kg User Height: 140-175cm Medifab has recently introduced the Carrot XL – the largest car seat/booster on the market. This largersized car seat is suitable for older children and adult users who will not fit into the Carrot 3000. If you already have the Carrot 3000, you can purchase an upgrade kit, instead of purchasing a whole new car seat when the child grows out of the existing seat. The kit includes: đƍ ƍ +3ƍ,.+ß(!ƍ3% !ƍ/! 0ƍ /! đƍ +*#!.ƍ)!0 (ƍ.+ /ƍ"+.ƍ /! đƍ ĥ$ .*!// đƍ %,ƍ !(0 The XL is equipped as standard with: đƍ +3ƍ,.+ß(!ƍ3% !ƍ/! 0ƍ /! đƍ .#!ƍ/%6!ƍ$! .!/0 đƍ $+1( !.ƍ,.+0! 0+.ƍ3%*#/ đƍĆĀƍ))ƍ '.!/0ƍ!40!*/%+* đƍƍ 40!* (!ƍ/$+1( !.ƍ,.+0! 0+.ƍ3%*#/ƍ$+( ƍ * ƍ,.+0! 0ƍ the body from side impacts and centrifugal forces đƍƍ !0$!.ƍ+,0%+*/ƍ%* (1 !ƍ %0%+* (ƍ/! 1.%05ƍ0!0$!.ƍ"+.ƍ0$!ƍ top of backrest or ISOfix latch connectors, these may be required by your local authorities Starlight-Reha Price: POA For: User weight: 9–36kg
đƍƍ 0/ƍę + 5ƍ +*0+1.%*#Ěƍ !/%#*ƍ$+( /ƍ0$!ƍ $%( ƍ%*ƍ ƍ !*0.! ƍ and secure position to ensure optimum support and safety during transport. Ergonomic head support provides added positioning and security
Fully adjustable special needs car seat, which offers excellent postural support, an inbuilt tilt function and extra slim swivel base options, which allow more space and headroom inside the car. It uses vehicle seatbelt to secure the child.
Ä‘ĆŤĆŤ % !ÄĄ%), 0ĆŤ,.+0! 0%+*ĆŤÄĄĆŤ!.#+*+)% ĆŤ3. ,ÄĄ/$ ,!ĆŤ$! ÄĄ support and extendable shoulder protector wings. Shock absorbing F1-comfort pads on the shoulder straps add superior support and comfort Ä‘ĆŤĆŤ ĆŤ( 0 $ĆŤ * ĆŤ +**! 0+. Ä‘ĆŤĆŤ ! (%*%*#ĆŤ"1* 0%+* Ä‘ĆŤĆŤ $!/0ÄĄ/1,,+.0 Ä‘ĆŤ '.!/0ĆŤ%*Ăź((ĆŤ,
%*#
Ä‘ĆŤ +"0ĆŤ/$+1( !.ĆŤ,
%*#
Ä‘ĆŤ (%)ĆŤ( 0!. (ĆŤ0.1*'ĆŤ/1,,+.0/
WINTER 2016
đƫāĀŋƫ0%(0ƫ đƫ /!ƫ + . ƫ !//+.5 đƫƫ 3%2!(ƫ /!ƫ/5/0!)ƫĨ(!"0ƫ01.*%*#ƫĢƫ.%#$0ƫ01.*%*#ƫ *ƫ !ƫ scripted to order) đƫ ! 0ƫ/0 %(%/ 0%+*ƫ ( ),ƫ +3 đƫ .!5ƫ1,$+(/0!.5 đƫĆġ,+%*0ƫ +)"+.0ƫ$ .*!//ƫ3%0$ƫ,
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Ipai Price: POA For: User weight: 15-36kg Ipai is a fully adjustable special-needs seat, which can accommodate smaller children with additional cushioning and pad accessories. Simply remove these cushions once the child grows and no longer requires them for correct seat fitting.
be used to offer postural support and assist in seating the occupant in an upright sitting position where extra support and positioning is required during travel. It is not classed as a safety harness, so a seatbelt is worn over the harness while driving in the car. Medifab strongly recommend that a safety webbing slicer is purchased with every vehicle harness and kept in the vehicle as a safety precaution.
The ‘Mainstream’ options: Infasecure
Evolve Treo Price: $449.99 For: Ages: from 6 months to 8yrs đƫƫ *ġ 1%(0ƫ$ .*!//ƫ3%0$ƫ &1/0 (!ƫ height harness buckle đƫƫ . 1 (ƫ.! (%*!ƫĢƫ1*.!/0.% 0! ƫ recline positions
đƫ .ƫ/! 0ƫ3%0$ƫ (1!ƫ1,$+(/0!.5ƫ
đƫƫ 3%/0ƫĒƫ %"0Ĵƫ+*!ġ$ * ! ƫ harness adjustment
đƫ /!ƫ + . đƫ !"0ƫ$ * ƫ/3%2!(
đƫƫ %.ƫ + ++*ƫ0! $*+(+#5ƫ integrated with twist resistant harness straps
đƫ ( ),ƫ +3 đƫ %2!ġ,+%*0ƫ +)"+.0ƫ$ .*!// đƫƫ .#!ƫ +)%* (ƫ, ƫ,.+0! 0/ƫ $%( ƫ 0ƫ0$!ƫ$ .*!//ƫ buckle đƫ 4 (1/%2!ƫ2!*0%( 0%+*ƫ/5/0!)
Not quite a car seat: Houdini 13 Harness Price: POA For: Older children and adults
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đƫƫ 2 %( (!ƫ%*ƫü2!ƫ +(+1./ƫ đƫƫ /5ƫ0+ƫ.!)+2!ƫ +2!./ƫ * ƫ,(1/$ƫ +)"+.0ƫ%*/!.0/ đƫƫ 1((ġ(!*#0$ƫ/! 0ƫ,.+0! 0+. đƫƫ 3+ƫ,+,ġ+10ƫ 1,ƫ$+( !./ đƫƫ /5ƫ%*/0 ((ƫ !(0ƫ, 0$ đƫƫ "! .%,ƫ !(0ƫ ( ),ƫ%* (1 ! Grandeur Vera Price: $689.99 For: Ages: from birth to 8yrs The only car seat in Australia that allows both extended rearward facing (to 30 months) with extended harnessing in forward facing (to eight) in one seat. Features: đƫƫ (0. ƫ +), 0ƫ3% 0$ƫĢƫ#.! 0ƫ"+.ƫ three across
Unique rear fastening with all the buckles being behind the seat backrest. Ideal for larger children and/or adults who don’t require/ have access to a larger sized car seat and still need the safety and security of a full harness. The Houdini is a vehicle positioning harness for children and adults with special needs where the person has difficulty with attention and safety. Alternatively, this harness can also
đƫ ! 1.ġ %.ƫ0.%,(!ƫ( 5!.ƫ . /$ƫ,.+0! 0%+* đƫ %.ƫ + ++*ƫ0! $*+(+#5ƫ%*0!#. 0! đƫƫ 0%2!ƫ" .% čƫ$ . ƫ3! .%*#Čƫ ++(ƫ * ƫ +)"+.0 (!ƫ%*ƫ three modern colours đƫƫę 3%/0ƫĒƫ %"0Ěčƫ+*!ġ$ * ! ƫ$! .!/0ƫ * ƫ$ .*!//ƫ adjustment đƫ .!//ġ/01 ƫ 00 $! ƫ +2!.ƫĢƫ.!)+2!ƫ3%0$+10ƫ1*%*/0 ((%*# đƫ /5ƫ.!)+2!ƫ/$+1( !.ƫ, /
20
WINTER 2016
CAR Feature Ä‘ĆŤ 3%/0ĆŤ.!/%/0 *0ĆŤ/$+1( !.ĆŤ/0. ,/
Features:
Ä‘ĆŤ &1/0 (!ĆŤ .+0 $ĆŤ 1 '(!
Ä‘ĆŤĆŤ % !ĆŤ%), 0ĆŤ 1/$%+*ĆŤ0! $*+(+#5ƍĨ Ä´ÄŠÄ?ĆŤ) 4%)%/!/ĆŤ$! ĆŤ protection by dramatically reducing side impact forces
Ä‘ĆŤ !3ĆŤ !/%#*ĆŤ%*" *0ĆŤ%*/!.0 Ä‘ĆŤ %*!ĆŤ.! (%*!ĆŤ,+/%0%+*/ Ä‘ĆŤ /5ĆŤ%*/0 ((ĆŤ !(0ĆŤ, 0$ Ä‘ĆŤ !0$!.ĆŤ/0. ,ĆŤ &1/0!.ĆŤÄ™/ "!05ĆŤ6+*!Äš Ä‘ĆŤ +ĆŤ *0%ÄĄ.! +1* ĆŤ .ĆŤ.!-1%.! Ä‘ĆŤ (0. ÄĄ(+3ĆŤ,.+Ăź(!ĆŤ /!
Ä‘ĆŤĆŤ 4, * (!ĆŤ/% !ĆŤ3%*#/Ä?ĆŤ $%( .!*ĆŤ *ĆŤ" ((ĆŤ /(!!,ĆŤ * ĆŤ slump. The expandable side wings deliver lateral support ensuring your child’s body is sitting upright, providing a safer seat belt fit. When expanded they provide 100mm extra space Ä‘ĆŤĆŤ 4, * (!ĆŤ/! 0Ä?ĆŤ,.+2% !/ĆŤ ĆŤ( .#!.ÄŒĆŤ)+.!ĆŤ +)"+.0 (!ÄŒĆŤ seating area as your child grows. Extends a further 70mm in length and includes a cushion top layer for extra comfort
Ä‘ĆŤ !$% (!ĆŤ/! 0ĆŤ,.+0! 0+.ĆŤ%* (1 ! Ä‘ĆŤ "! .%,ĆŤ !(0ĆŤ ( ),ĆŤ%* (1 !
Britax
Safe-n-Sound Encore 10 Price: around $389.00 For: Ages: 4-10yrs This booster looks more like the usual booster – it’s just bigger. It uses the car seat belt to secure your child but a harness attachment can be added.
he l T : t 3 ecia o r r Ca ate Sp eat m Car S i t l U ds e e N Configure for Postural Support or Behavioural Needs
Ä‘ĆŤĆŤ $!ĆŤ (% !#1 . Ä´ĆŤ (%,Ä?ĆŤ ĆŤ(%"!ĆŤ/ 2%*#ĆŤ !2% !ĆŤ0$ 0ĆŤ,.!2!*0/ĆŤ your child from sliding under the lap-belt (submarining) during impact, thus minimising the risk of abdominal injury Ä‘ĆŤĆŤ 1%(0ÄĄ%*ĆŤ/ /$ĆŤ#1% !Ä?ĆŤ +..! 0(5ĆŤ,+/%0%+*/ĆŤ0$!ĆŤ/! 0ĆŤ !(0ĆŤ across your child’s chest and shoulder. If you are unsure of any car seat safety laws or regulations please go to www.childcarseats.com.au They explain everything, including all about the legislation regarding introducing the ISOFIX system to Australia, how it works and the laws particularly well.
Ergonomically designed HEAD SUPPORT holds the head and protects from side impacts and centrifugal forces
TETHER OPTIONS include additional security tether for the top of backrest or ISOfix latch connectors. These may be required by your local authorities.
2 positions of SEAT DEPTH ADJUSTMENT for a better fit Anti-escape buckle upgrades available
Huge growth for pre-schoolers to older children
SHOULDER PROTECTOR WINGS: Extendable wings hold and protect the body from side impacts and centrifugal forces
Large CHEST SUPPORT holds the body securely
RECLINE FUNCTION with angle adjustable seat and backrest
? ing eat s e icl r. veh plie d p e u t s por t3 sup l Carro d an oca safe ur l o m y ro of fit f tails e ene d b ild for Call 1300 543 343 r ch ifab u d o e ly solutions@medifab.com M t c Wil ta www.medifab.com.au Con
GRANDEUR THE ONLY SEAT YOU’LL EVER NEED
Grandeur represents a shift in car seat safety in Australia. The internal harness is used for the life of the child restraint, providing restraint and support from birth all the way through to a large 8 year old. Deep headrest wings provide head and neck protection and support, and 9 levels of recline allow your child to be as comfortable as they are safe. Grandeur – best practice safety and comfort from birth.
0-8 years
FOR ALL CHILDHOOD STAGES Single seat from birth to 8 years
TWIST & LIFT Easily adjust headrest in seconds without uninstalling seat
EXTENDED REARWARD FACING approximately 2 to 3 years
ACTIVE FABRIC Hard wearing, cool, comfortable. Machine-washable fabric
6 POINT HARNESS From birth to a large 8 year old
SECUR-AIR TECHNOLOGY Triple layer crash protection
infasecure.com.au
facebook.com.au/infasecure
instagram.com/infasecure
youtube.com.au/infasecure
• Passenger & Driver configurations available
• Exceptional ride comfort & visibility for all occupants
• Vehicles tailored to meet your specific needs
• Authorised service centres Australia wide
• Conversions exceed Australian Standards
1800 662 454 Call now to schedule a free demonstration automobility.com.au
WINTER 2016
23
CAR Feature
Modified vehicle Darren and Sharon Wills have purchased and modified a VW Caddy so they can better transport their son Jarod. Jarod is 17 years old and has Dravet Syndrome (go to www.dravetdata.com for more information on Dravet Syndrome) and epilepsy, which is not well controlled. He does have some independent mobility through crawling, however he requires assistance to stand and maintain a weight-bearing position. Jarod requires a manual wheelchair for his primary mobility, and as he grows, it has become increasingly difficult to transfer him in and out of the family vehicle. I spoke to Sharon about the purchase, the modification process, and how having a modified vehicle is working for them as a family.
Our family consists of: Darren and Sharon Wills Angelica, 19 Jarod, 17 Why we required an adapted vehicle: As a teenager nearing adulthood, Jarod was too big to be comfortably transferring in and out of our vehicle. Not to mention that we as parents are both in our late forties and the physical strength required for the manual lifting is failing us. Our bodies are reaching physical limits and back injuries seem to have become a common occurrence. It’s also a substantial weight to lift a manual wheelchair into and out of the back of the vehicle for each use.
The main reasons we left it so long to obtain a vehicle is that: đƫƫ !ƫ % *Ě0ƫ3 *0ƫ0$!ƫ ! ƫ!4,!*/!ƫ * ƫ0$!ƫü* * % (ƫ burden associated with it. đƫƫ ƫ2 *ƫ%/ƫ0$!ƫ( /0ƫ/+.0ƫ+"ƫ2!$% (!ƫ3!ƫ3+1( ƫ,1. $ /!ƫ"+.ƫ the money if we had any other option. đƫƫ $!ƫ% ! ƫ+"ƫ .%2%*#ƫ ƫ %#ƫ * ƫ 1) !./+)!ƫ2!$% (!ƫ3 /ƫ scary for Sharon and the idea of parking it even scarier.
Why we chose the vehicle we did: đƫƫ $!ƫ ƫ 5ƫ%/ƫ)1 $ƫ/) ((!.ƫ0$ *ƫ0$!ƫ2 */ƫ0$ 0ƫ3!ƫ had assumed we would need to explore, more in line with a station wagon and in fact it is classified as a station wagon and not a van by the manufacturer.
đƫƫ (0$+1#$ƫ*+0ƫ0$!ƫ)+/0ƫ 00. 0%2!ƫ2!$% (!Čƫ%0ƫ%/ƫ3!((ƫ) !ƫ and finished off nicely with basic features that make the vehicle comfortable to drive and travel in. The inclusion of climate control is a bonus and reversing sensors make reversing less stressful. Having a diesel engine also has its perks with reduced running costs from what it would be with petrol and better overall performance. đƫƫ $!ƫ.! /+*ƫ3!ƫ3!.!ƫ(++'%*#ƫ%*ƫ0$%/ƫ %.! 0%+*ƫ3 /ƫ /! ƫ on advice sought from Les Brazier, the company that provided the vehicle and did the modifications. It is also a vehicle they happened to have on show and to borrow/ lease, allowing us to test the viability and ease of use of the vehicle before committing to any purchase. đƫƫ *+0$!.ƫ.! !!)%*#ƫ"! 01.!ƫ%/ƫ0$ 0ƫ%0ƫ ((+3/ƫ"+.ƫü2!ƫ/! 0/ƫ as well as the wheelchair, meaning that we could fit the entire family, as well as two additional people. That’s six in total, which, as you can imagine, is extremely handy. Considering its smaller size, it has a huge capacity in this regard. A standard van would allow for four seats only, making the capacity five in total. Despite having more seat capacity the back seats are still roomy and more than sufficient to hold adults facing forward as would be expected in a conventional vehicle. đƫƫ !ƫ$ ƫ%*%0% ((5ƫ%*0!* ! ƫ0+ƫ,1. $ /!ƫ ƫ.!(% (!ƫ+( !.ƫ vehicle, rather than new, that would suit the purpose with the intent of saving money, but suitable vehicles of this nature could not be found. They either had too many kilometres on the clock or they were too old and better suited to scrap metal. People just don’t sell their vans; they keep them until they die. Reliability was always a main factor and something we would not compromise on. Being stuck on the side of the road with a seizing, wheelchair bound child was never going to be an option.
The modifications we opted for: đƫ +3!.! ƫ0$!ƫ.! .ƫý++.ƫ+"ƫ0$!ƫ2!$% (! đƫƫ ! 1.! ƫ0$!ƫ/, .!ƫ05.!ƫ1/1 ((5ƫ1* !.ƫ0$!ƫý++.ƫ0+ƫ0$!ƫ inner side of the vehicle đƫƫ
! ƫ ƫ. ),
đƫƫ ! ƫ0$!ƫ)+0+.%/! ƫ3%* $ƫ * ƫ/0. ,/ƫ"+.ƫ/! 1.%*#ƫ0$!ƫ wheelchair. Note this does not assist with getting Jarod
24
WINTER 2016
CAR Feature and the chair up the ramp; this is still a manual push task, but not too difficult Ä‘ĆŤ
! ĆŤ ((ĆŤ/! 1.%*#ĆŤ,+%*0/ĆŤ!0 Ä‹
đƍƍ %*%/$! ƍ+Ýƍ ((ƍ)+ %ß 0%+*/ƍ/+ƍ0$!5ƍ (!* ! ƍ/! )(!//(5ƍ with the existing dÊcor
How long it took/what the process was like/how much it cost: This is a bit foggy now, but from memory the process took maybe six months. Here are the steps we took: Ä‘ĆŤĆŤ !ĆŤ ,,.+ $! ĆŤ .+ Äš/ĆŤ,$5/%+0$!. ,%/0ĆŤ0+ĆŤ /'ĆŤ"+.ĆŤ 2% !Ä‹ĆŤ They suggested contacting the two companies in South Australia who do adaptations to see what they could do.
Ä‘ĆŤĆŤ !ĆŤ3!.!ĆŤ'!,0ĆŤ1, 0! ĆŤ0$.+1#$+10ĆŤ0$!ĆŤ,.+ !//ĆŤ * ĆŤ0$!ĆŤ company kept to their estimated schedule. Ä‘ĆŤĆŤ $!*ĆŤ0$!ĆŤ2!$% (!ĆŤ3 /ĆŤ.! 5ĆŤ"+.ĆŤ1/ĆŤ3!ĆŤ, % ĆŤ0$!ĆŤ outstanding amount in full for both the vehicle and the adaptions, minus the $25,000, which was billed directly to Variety, and took possession of the vehicle. Ä‘ĆŤĆŤ $!ĆŤĂź* (ĆŤ +/0ĆŤ3 /ĆŤÄ¸Ä‡Ä…ÄŒÄŠÄƒÄ†ĆŤ%* (1 %*#ĆŤ0$.!!ĆŤ)+*0$/ĆŤ registration: $25,000 paid by Variety and $39,935 by us. The price for the vehicle and the price for the conversion is somewhat blurred, but I tend to think of it as that we paid for the vehicle and Variety paid for the conversion. A fee was also required to get the vehicle in Jarod’s name. By purchasing the vehicle in his name we saved on stamp duty. This is also good to know.
Ä‘ĆŤĆŤ "0!.ĆŤ $++/%*#ĆŤ0$!ĆŤ .ĆŤ)+ %Ăź 0%+*ĆŤ +), *5ÄŒĆŤ3!ĆŤ$ ĆŤ ĆŤ meeting with them to determine our needs and discuss possibilities and were shown a few options. After seeing that the VW Caddy held more people, but was smaller in general to a standard van we started to narrow our thinking and opted to take the VW Caddy converted lease car out for a weekend trial. It turned out to be quite easy to drive and although the ramp and securing of the wheelchair was tricky, it became obvious that it was just a matter of getting used to all the steps and once we got used to it, it would become second nature. This proved to be true.
What we love about the vehicle/adaptions:
Ä‘ĆŤĆŤ !ĆŤ+ 0 %*! ĆŤ ĆŤ"1((ĆŤ-1+0!Ä‹
What we would do differently next time:
Ä‘ĆŤĆŤ !ĆŤ ,,(%! ĆŤ0+ĆŤ .%!05ĆŤ"+.ĆŤ"1* %*#ĆŤ0+ĆŤ //%/0ĆŤ3%0$ĆŤ0$!ĆŤ vehicle and/or conversion, stating that any assistance would be appreciated. This process included supplying supporting documentation from ourselves, from our physio and financial information, which was used to determine our financial need, as funding is based on financial hardship.
We would have done it sooner in hindsight, if we knew how easy it would be.
Ä‘ĆŤĆŤ 0ĆŤ0++'ĆŤ ĆŤ +1,(!ĆŤ+"ĆŤ)+*0$/ĆŤ"+.ĆŤ .%!05ĆŤ0+ĆŤ //!//ĆŤ+1.ĆŤ application and give us a grant of $25,000 to pay toward the costs, essentially covering the conversion cost of the vehicle. Ä‘ĆŤĆŤ !ĆŤ,.+),0(5ĆŤ+. !.! ĆŤ0$!ĆŤ2!$% (!ĆŤ * ĆŤ3!.!ĆŤ,( ! ĆŤ+*ĆŤ the modification waiting list. The company had already ordered some of the VW Caddies and were expecting them to arrive in South Australia around the time they would be ready to do the modifications.
Ä‘ĆŤ $!ĆŤ,.+ !//ĆŤ3 /ĆŤ! /%!.ĆŤ0$ *ĆŤ3!ĆŤ0$+1#$0Ä‹ Ä‘ĆŤ 1.ĆŤ '/ĆŤ .!ĆŤ,. %/%*#ĆŤ0$!ĆŤ ! %/%+*Ä‹ Ä‘ĆŤĆŤ !ĆŤ .!ĆŤ)+.!ĆŤ(%'!(5ĆŤ0+ĆŤ0 '!ĆŤ .+ ĆŤ+10ĆŤ3%0$ĆŤ1/ĆŤ /ĆŤ ĆŤ" )%(5ÄŒĆŤ rather than leave one parent at home when we got out to do things like the shopping. Ä‘ĆŤĆŤ !ĆŤ(+2!ĆŤ0$!ĆŤ2!$% (!Äš/ĆŤ.!(% %(%05ĆŤ * ĆŤ! /!ĆŤ+"ĆŤ1/!ÄŒĆŤ%0Äš/ĆŤ ĆŤ2!.5ĆŤ comfortable, easy to drive vehicle.
How the vehicle works for our whole family: It is making life easier in general.
Any tips for families considering modifying a vehicle: đƍƍ Ě ƍ$%#$(5ƍ.! +))!* ƍ +*0 0%*#ƍ .%!05ƍ * ƍ *5ƍ+0$!.ƍ charity you believe might be able to assist with the financial aspect of your purchase. Let’s face it, it is not the vehicle you would likely buy if your situation were different, and financial stress doesn’t help anyone. Variety have been exceptional in this way. đƍƍ $!ƍ +), *5ƍ3!ƍ1/! ƍ3!.!ƍ (/+ƍ ƍ#.! 0ƍ.!/+1. !ƍ * ƍ leasing a vehicle before you buy can save you a lot of heartache by working out all the potential problems and/ or advantages in advance. It’s one thing to work through something in theory, but often entirely different when you test something physically. You are guaranteed to add something to that problem/advantage list before you are through and at least this will allow you to work through the problems and find solutions before committing to an investment that will need to work for many years to come.
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WINTER 2016
CAR Feature your kids’ friends, do you have room for them too? What about elderly relatives on Christmas day when they are too old to drive themselves? đƫƫ /0(5Čƫ +*Ě0ƫ,.+ . /0%* 0!ċƫ +ƫ%0ƫ*+3ƫ%"ƫ0$!ƫ*!! ƫ%/ƫ0$!.!ċƫ Don’t leave it like we did.
đƫƫ +*/% !.ƫ0$!ƫ*!! /ƫ"+.ƫ0$!ƫ"101.!ċƫ ƫ .ƫ3%((ƫ*!! ƫ0+ƫ function for you for 10+ years - it’s an investment in your future. Will an adult wheelchair fit? What about an electric wheelchair? Is the family growing? What about
Variety-the Children’s Charity is a national not-for-profit organisation committed to empowering Australian children who are sick, disadvantaged or who have special needs. The Wills family received a grant of $25,000 to go towards a wheelchair accessible vehicle. Variety funded 41 vehicles to families last year, which is an average of more than 3 every month. Go to www.variety.org.au for more information.
ADAPTED VEHICLES If your child is in a wheelchair and unable to self-transfer into their car seat, there will come a time when you will feel unable to continue lifting and transferring them and will need to think about other options. Modifying a vehicle for ease of use is something you may approach with some trepidation, and rightfully so. It is a very expensive process and one you need to make sure you get right. Thankfully, there are some really fantastic companies out there, who can really help you to make the correct decisions for your family.
So, what do you need to do? Decide whether you want to buy a pre-adapted vehicle or a vehicle that you have specifically adapted for your child.
đƫƫ ,! 'ƫ0+ƫ5+1.ƫ,$5/%+ƫ * ƫ#!0ƫ0$!%.ƫ 2% !ƫ+*ƫ!4 0(5ƫ what it is you are going to need. đƫƫ +*0 0ƫ ƫ +), *5ƫ3$+ƫ/,! % (%/!/ƫ%*ƫ)+ %ü! ƫ+.ƫ modifying vehicles. đƫƫ ,,(5ƫ"+.ƫ"1* %*#ċƫ It is important to remember that when purchasing any wheelchair accessible conversion or modification that you do your research and request the relevant documentation in relation to Australian standards and ADR approvals. All modifiers should be able to produce tested certification on all wheelchair and occupant restraints and lifts/hoists. Anyone that cannot simply does not have the compliance requirements.
Where therapy is not hard work - it’s fun Therapies for Kids are specialists in providing individual programmes that are appropriate for each child’s specific needs and which help to improve their fun and function in everyday life. We have a holistic and transdisciplinary approach to treatment, which is delivered in our all-abilities gym or in a school environment, resulting in increased participation in the community.
Therapies for Kids Paediatric Physiotherapy Occupational Therapy Speech Pathology & Podiatry
37 Nelson St, Annandale NSW 2038 - (02) 9519 0966 - www.therapiesforkids.com.au
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TOP 10 PHYSIO TIPS on how to get in and out of the car Getting your child into and out of the car as part of your daily routine may present a challenge! Parents who assist a child with special needs into and out of the car may use a great deal of carrying and lifting in ensuring their child’s safety, however, this task should not be physically demanding if you follow our simple top ten tips!
7. Flip back footplates These are a great wheelchair attachment that makes transferring into and out of the car easier. By flipping back the footplates you are able to place a small stool under your child’s feet to perform a standing transfer.
8. Be environment ready 1. Social story If getting into and out of the car causes your child to become anxious create a social story. A social story is a visual sequence of events that will assist your child navigate a situation they may find difficult to manage. You can keep a social story in the car and use as required.
2. Small stool outside car You can place a small stool on the outside of the car. This will provide your child with a smaller step in order to get in and out of the car. You can use a stool for a child with decreased strength in their legs. This method is most beneficial for children who are able to do a standing transfer.
3. Small stool inside car You can place a small stool inside the car. This will allow your child to lower themselves onto the stool prior to getting in or out of the car. The stool will decrease the height your child has to transfer from getting in or out of the car. A small stool inside the car is suited for children who transfer out of the car into a wheelchair or with assisted standing transfers.
4. Car seats with low sides A car seat with low sides will make transferring your child out of the car easier. A car seat with high sides presents an obstacle that children need to climb over in getting out of the car. A car seat with low sides is most suitable for children with decreased strength or transferring from or into a wheelchair.
5. Get rotation ready Rotation is an important movement required when getting in and out of the car. However, it is a skill that needs to be practiced! You can assist your child develop rotation skills by climbing into and out of boxes, the bath and onto and off chairs. This skill should be developed from an early age.
6. Lower height of car seat The height of the car seat can make all the difference in assisting your child into and out of the car. If possible lower the height of the seat to ensure your child can transfer out of the car with their feet on the floor. This is always something to consider when purchasing a car for children. A lower height car seat is beneficial for most children.
Ensure that your car and surrounding environment are safe prior to performing a transfer. This means removing obstacles, positioning mobility aids nearby and ensuring heights between car seat and wheelchair are similar (you can use a slide board when required). It’s is a good idea to park parallel to the gutter as well as allowing room for yourself to stand to assist with the transfer. This is a vital tip for all children to ensure safely getting into and out of the car.
9. Take care of yourself You need to be healthy and injury free in order to care for your child, so taking care of yourself during transfers is very important. If more than one person is required to assist your child getting into and out of the car – get an extra pair of hands to help when able! Otherwise, use a stool or alternate piece of equipment to assist you. Maintain good posture throughout helping your child out of the car by bending your knees, bracing your abdominal muscles and avoiding twisting movements. Through maintaining good posture you will prevent injury.
10. Teamwork Your physiotherapist can provide you with step by step instructions on how to perform standing, sliding and lifting transfers. Your occupational therapist will also be able to suggest transfer aids and equipment to make getting out of the car easier for you. Each child is an individual and unique, therefore we can only provide you with generalised tips! In some cases you may need to seek further assistance for a specific problem from your therapist. I encourage you to adopt a problem solving approach as there is not always a right or wrong way to get your child into and out of the car. It is important that you consult your physiotherapist for support and advice. Getting into and out of the car is an everyday task and an important functional aspect of your child’s life! This article has been contributed by paediatric physiotherapist Debbie Evans. Debbie Evans is the Executive Director and Clinical Director of Physiotherapy at Therapies for Kids www.therapiesforkids.com.au
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CAR Feature
Michael Young
In-car technology
Tablets are great for kids to use and they help relieve the boredom on long car journeys. Using a tablet on your lap for long periods of time can have a few undesired effects. The problem that I’ve found is that my child has his head down looking at the iPad and he ends up getting car sick. I would imagine he would get a sore neck too. We originally introduced technology into our car when our son was three and had a halo brace after surgery. The brace limited his movements, so a small screen - built into the headrest - worked great for him at the time. Technology has moved on - most kids can’t seem to survive for a trip to the shop without entertainment - so how can you do that safely? With a headrest mount they could have the iPad mounted at eye level on the back of the headrest. It just clips on, and the iPad is removable when you reach your
destination. Then your child can watch a movie during their car journey. However smaller children might have trouble reaching it to use the touch screen. Headphones would be a good idea too! When the batteries start to go flat you have a few options. There are in-car chargers that charge from the car cigarette lighter; you can utilise a battery top up device that recharges your tablet on the move; or look out the window and play car cricket. If you want to access the Internet on the move, you could hot spot your phone so the kids can access your Wi-Fi. There are also many prepaid mobile Wi-Fi hotspot devices that you can top up to allow the kids access while you’re driving around; and they can be useful when you’re on holiday too.
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WINTER 2016
Sporty Kids
Sporty Kids DANCING as therapy Dance Movement Therapy is the therapeutic use of movement to further the emotional, cognitive, physical and social integration of the individual, based on the empirically supported premise that the body, mind and spirit are interconnected.
Dr. Kim Dunphy, a director at Making Dance Matter and President of the Dance Movement Therapy Association of Australasia, says DMT offers people with a disability many positive experiences. “The most significant is the opportunity to express themselves creatively,’’ Dr Dunphy explains. “This can be very important for those who have few other opportunities for self-expression, including those who have limited verbal communication skills. “DMT can also contribute to physical fitness, including strength, coordination and stamina; mental wellbeing, such as confidence and self-esteem; and social connection, through the opportunity for enjoyable shared activities with peers. “DMT can be an effective approach to learning through the arts for students who have greater learning challenges.’’ Perhaps less obvious is the benefit dance can bring to parents and families of children with special needs. “Many suffer chronic grief about the child who might have been and need opportunities to celebrate their children’s achievements, perhaps even more than other parents,’’ she notes. Dr Dunphy has been involved in the development of an innovative new iPad ‘App’ to help dance movement therapists assess the progress of their clients. Dr Dunphy says that previously there were few ways that DM therapists could efficiently assess clients with methods that were sound and feasible.
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“It reduces paperwork for the therapist but improves their capacity to assess progress of the client in the DMT process. This enables the therapist to spend more quality time working with clients and reflecting on their progress informed by evidence from the assessment process.’’ An example of the positive influence dance classes can have on a person is evident in Veronica’s 18-month journey to dance. Here is her story, as told by Dr Dunphy’s colleague Jenny Scott. “Veronica is a member of a dance movement therapy program at an SDS. Veronica lives much of her life through her imagination, referring to herself as a princess or a mermaid and describing imaginary adventurous things she has done like crocodile hunting and swimming with Flipper the Dolphin. Her imagination is so active it is difficult for her to maintain focus on any group activity. Veronica’s dance group’s weekly three-hour session includes time for a short solo performance from each participant. Veronica has loved the idea of this opportunity, but found it difficult to carry it out successfully. In the beginning, she would make her choice of music enthusiastically, position herself in a corner of the room and then just smile to herself as she dreamed away to the music. After some weeks, she began to move her arms in wide circles and say, ‘Wow’ a few times during her piece of music. Months later Veronica began to develop some movement expression, but still remained mostly in her own world with little sense of sharing or performing for the group. After about a year, I decided that it was important that Veronica become more spatially aware as a way of
Perform-Ability is a dance, music and drama program for people of all ages with special needs and disabilities. * Classes held within day centres, disability service organisations, public schools, dance schools and local halls. * 20 locations throughout Newcastle, Central Coast and Sydney areas * Only pay for classes you attend * Inclusive and numerous performance opportunities
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developing some connection with the audience and to prompt a move from her contained world in the corner. I marked out squares on the floor with masking tape and strategically placed them so that she came closer to the audience with every step into a new square. Veronica was delightfully surprised to find herself close to the audience when she stepped into the last square. The turning point for Veronica came when she noticed her peers watching as she made her special circling arm movements and said her usual, ‘Wow’. From that session on, she began to expand her sense of performance. It was as if she had needed to become aware of her potential for creating pleasure in others for this transformation to take place. Once the ‘light’ was switched on, Veronica began to use the whole length of her selected piece of music to explore movement. Over time, her attention to the performance task improved, along with a noticeable development in her ability to dance for longer periods before disconnecting and attending to unrelated things or wandering back to her corner. In a recent session, Veronica started her dance in a chosen pose, used the entire performance space, created dramatic moments with balancing poses, performed fast and slow twirling movements and ended by throwing her arms up in the air saying ‘Wow’. She followed this dance with a bow to her enthusiastic audience and remained in the performance space smiling at her peers. Veronica’s development as a performer over this time confirmed for me the value of opportunities for performance, even for group members like Veronica, who initially show a lack of ability or interest. It seemed worth waiting 18 months for this moment!’’
Provides families of children who have support needs with a central place for therapy, well-being and recreation A space for the local community to learn and support each other www.creativelc.com.au Phone: 03 9375 7239
info@creativelc.com.au Moonee Ponds VIC
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Sporty Kids
Chance2Dance a tribute to daughter Those who dance understand the power it has over one’s body, mind and soul - a magical ability to transform you and take you to a better place. That uplifting feeling is not just reserved for prima ballerinas or professional artists - it embraces everyone, including those with special needs. The enjoyment is real and raw at chance2dance - an organisation established by dance teacher Megan Sutton. Megan’s daughter, Monique Eva, was born with Downs Syndrome but passed away from Bronchiolitis that was too strong for her aged 20 months. “My daughter was meant to have a beautiful long life. She made it through three open heart surgeries and then this horrible infection took her away,” Megan recalls. Chance2dance is a tribute to her.
“I had long wanted to have a dance school for special needs,” Megan begins. “Being a dance teacher, pre-school teacher and having a sister with special needs, I saw there wasn’t a place where superstars could experience the real dance world while being loved and accepted. “After my daughter was born I wanted to make an awareness in society for DS and special needs, so I started to put it together and become more focused on the long awaited project! “When my precious girl passed away it fired me to get it going ASAP in her memory.”
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STANDARD INCLUSIONS ћұ ñĹĦĖݹұ¨¿ìĬĝĦ¨¸ñÄұ¸Ä¿ұÙÄÝÓÙĦ ћұjÄĖĝĂù¨ñұēĬĝÙұ¸ĬŪĦĂùұÙ¨ù¿ұ¹ĂùĦĖĂñ ћұlĬ¨ñÝĦņұҕ ÄŀÄĖĦҖұ,ÄĖø¨ùұø¨¿ÄұÄñĹĦĖĂùݹĝ ћұmÄøĂĿ¨¸ñÄұÙĨ¿ұ¨ù¿ұÒĂĂĦұ¸Ă¨Ė¿ĝ ћұtÄñÒұÙÄñēұēĂñÄұøĂĬùŪÝùÓұ¸Ė¨¹îÄĦ ћұ ¨ññұ¸ĬøēÄĖ ћұt IќұϹϷϷұîÓ ћұϸϷұņĨĖұĝĦĖĬ¹ĦĬĖ¨ñұŀ¨ĖĖ¨ùĦņ ћұϼұ ĨĖұÄñĹĦĖݹ¨ñұŀ¨ĖĖ¨ùĦņ
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The school opened on October 12, 2014, a month after she died.
“Everybody loves performances. It’s a chance to show the world how amazing our stars are!’’
“She’s the best thing that ever happened to me and I miss her so so much,” Megan says.
Added to the enjoyment are benefits, both physical and cognitive, including gross motor skills, balance, hand-eyefoot coordination, spatial awareness, sequence and pattern formation, enhanced memory, creativity, and rhythm.
But, her memory lives on in the 40 superstars who now tread the boards at chance2dance. “The participants have a fantastic time,” Megan says joyfully. “They love coming each week to see their friends. They enjoy moving to the music and dancing to their favourite songs and they especially love putting together our routines for different shows!
“I danced as a child and went on to perform and choreograph professionally throughout my 20s and 30s but none of my dance experiences can compete with Chance2dance - it’s an entirely rewarding adventure, which brings much joy and love to my world.’’
“Our most recent was the Royal Easter Show, which was an absolute hit and we plan to eventually go to Disneyland and perform!” Jenelle and Jordyn (pictured) say the lessons are the highlight of their week and that they have enjoyed making new friends through the program. “Jenelle wakes up early on a day of performance very excited for the day ahead and Jordyn loves the stage he knows how to move and groove!
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Special Needs
TEACHER
Name: Michelle Cook Ages you teach: Currently 2-5 years at an Early Childhood Development Program. I have worked with children of all ages up to 12 years.
How long have you been teaching for? This is my 16th year of teaching with some breaks to have my two children. What is your teaching philosophy? A major teaching philosophy I adhere to is that children learn through doing rather than by being told. Therefore I endeavour to plan engaging, hands-on tasks, where they are intrinsically motivated to participate. I think learning should be fun and exciting. My other essential belief is that relationships are a key component to successful teaching. Learning requires risk-taking and therefore children require a safe and supportive environment, in order to challenge their abilities. I endeavour to encourage children to believe in their capabilities and have enough selfconfidence to make mistakes and still try again. Because learning is never giving up. The other crucial relationship is teacher to parent/caregiver. Fostering open, respectful communication with families is extremely beneficial for children’s education. What is your favourite activity to do with the children? I love to play with children – take their interests and guide them to further discovery. I’m also passionate about kinaesthetic learning. Research shows children learn better when moving so I love planning activities where kids are active while still engaged in curriculum such as doing phonics or sight words while completing an obstacle course or jumping while counting. How do you support a special needs child within a mainstream environment? One of the most important factors is effective communication with the mainstream teacher. Quite often my role has been educating teachers about ways to differentiate tasks for students with special needs. Sometimes differentiation can be as simple as extra time,
or completing a task digitally instead of using pen and paper. Other times I provide alternative learning activities that are based on the same content the class is learning but at a level that allows the student to achieve. Teacher aides are key factors in supporting students with special needs in mainstream classrooms as they are often the ones implementing lessons. What do you wish parents would tell you about their child at the beginning of the school year? I really like to hear about a child’s strengths and interests. It is also useful to know any fears or strong dislikes that a child has. I believe open communication with parents is an extremely important factor in teaching a child. I encourage parents to talk to me about their child’s home life, especially events or circumstances that are out of the ordinary such as a sick family member or moving house. Knowing that a child may be out of their usual routine is helpful when evaluating their behaviour. What’s your favourite part of your job? I have always been drawn to children with challenging behaviours and teaching them to self-regulate and make
WINTER 2016
good choices is extremely rewarding. I love to watch children persevere with a task and then see the look on their face when then achieve it. My favourite words are “I did it!” It’s also extremely heart-warming to see past students leave school, find employment and become contributing members of our society. Are there any toys/books/products you recommend? I think all books are fabulous and allowing children to be involved in their reading choices is the most important factor. If they choose the books, they are more engaged. Some of my favourite authors are Lynley Dodd, Mem Fox, Allan Alhberg, Julia Donaldson, Dr Seuss and Roald Dahl. I recommend the Spot series of books for young children. As far as toys go, I think children don’t need expensive toys. They need attention from an adult. There are so many inexpensive ways to teach children with regular household equipment, like making a tent fortress, cooking, playdough or art/craft with recycled boxes. Going for a walk or outing into the community is highly educational. There are some wonderful playgroups where children can interact with other children and parents/carers can connect also.
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WINTER 2016
Winter Health Feature
Winter
HEALTH
Winter and getting sick. They go together like, well, a sneeze and a tissue. Unfortunately, catching a sniffle is not just a minor inconvenience for many families with children who have special needs. Compromised immune systems, seizure disorders, and a myriad of other factors mean that one person’s cold could end up as a trip to hospital and a medical emergency for your child. Keeping them firmly ensconced in a bubble, while momentarily tempting, is not an ideal solution. Really, it isn’t. So how can you prevent the dreaded lurgy from descending upon your family? And what is that dreaded lurgy, anyway?
Not actually getting sick Obviously, prevention is better than cure. Most of the usual winter lurgies are caused by viruses, which means antibiotics won’t cure them, so you are left with trying to manage the symptoms and sleepless nights. How is it even possible that Wi-Fi exists and yet we can’t figure out how to cure the common cold? Prevention means keeping on top of all the usual healthy living advice: eat plenty of healthy food (up the fruit and veg and cut down on the sugars and carbs); keep hydrated; get enough sleep; make time for exercise; and try to get outside and see the sunshine, if possible. We have some great tips from a naturopath on ways to keep your immune system as healthy as possible this winter and also some great immune-boosting drink ideas.
Top 10 tips from a Naturopath to keep you healthy this winter Staying healthy this winter doesn’t have to be difficult or take a lot of time. By following some simple tips and incorporating them into your daily life you can keep your immune system strong and skip the winter health blues. 1. Bone Broth Good digestive health is imperative to a healthy immune system. Having bone broth daily will help to heal Leaky Gut Syndrome and will also protect your intestinal integrity. So use Bone Broth in your soups, stews, pasta sauces, risottos or anywhere else
you would normally use water and it will make all the difference to your immune system and, even better, your meals will taste great. 2. Heal your gut Your digestive system has a direct link to how our immune system performs. Make it a part of your daily health regime and incorporate a good quality probiotic daily and eat probiotic foods such as sauerkraut, kombucha, kefir (water or milk) and good quality yogurt. These help to maintain the bacterial balance within our digestive system which in turn keeps our immune system healthy. 3. Garlic Garlic is God’s gift to health and contains antibacterial and anti-microbial properties as well as reduces blood pressure, reduces cholesterol and is a natural anti-histamine. A little mix you can make up to keep those nasties away: gently warm 1 teaspoon of fennel seeds and 1 teaspoon of caraway seeds in 100ml of Apple Cider Vinegar (don’t boil), take if off the heat and add in about 10 peeled and crushed garlic cloves and mix through. Strain the mix, add 2 tablespoons of raw honey and use it as both a medicine and salad dressing. 4. Vitamin C An old faithful and something you can easily get from both your diet (fresh fruits and vegetables) and as a supplement from any pharmacy or health food store. Vitamin C is a potent antioxidant, which is great not only for the immune system but also for our cardiovascular system and skin. 5. Zinc Zinc is one of those minerals that serves many purposes in our body and deficiencies can lead to poor immune function, neurological issues, leaky gut, hair loss, skin conditions, food allergies and diarrhoea just to name a few. Supplementing with Zinc can be done by increasing Zinc containing foods to the diet or using a commercial supplement. Foods high in Zinc include beef, baked beans (home made versions not those sugar filled commercially available varieties), cashews, egg yolks, ginger, herrings, liver, milk, lamb, oysters, sunflower and pumpkin seeds, wholegrains and yeast.
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6. Herbs This could be a whole section in itself, as far as how effective the right herbs are to keeping us healthy this winter. Echinacea, Andrographis, Golden Seal and Olive Leaf are great all-round immune boosting herbs, as well as brilliant at supporting the body to perform its natural immune function by promoting an increase in your white blood cell count. Additionally, using herbs such as Yarrow, Elder and Peppermint combined as a hot infusion is fabulous as a remedy for colds and flu, too, as they have anti-bacterial, anti-inflammatory, anti-catarrhal and a diaphoretic effect on the body. 7. Water So simple, yet during the colder months something we often forget about. Water flushes out toxins from our body, supports the production of lymph, keeps our bowels working well (if we don’t drink enough water then we will often suffer from constipation) plus it supports mood and concentration by keeping our brains hydrated. 8. Sleep A very important aspect of a healthy immune system is simple yet something we find so difficult. Like growing children, we need our sleep otherwise we’ll find our immune system becomes compromised and we become susceptible to illness. As adults we require eight hours of sleep per night to enable our body to produce hormones, proteins and chemicals to maintain a healthy immune system. Sleep deprivation leaves us more vulnerable to viruses and bacterial infections. 9. Manuka Honey Manuka Honey contains strong anti-bacterial properties that have been found to be effective against digestive, skin and throat infections. When a sore throat hits a spoonful of honey doesn’t just make the medicine go down, it is the medicine. It can be used topically for skin infections, burns and blisters and is great to use on a daily basis just for health maintenance. 10. Juicing Fresh juices provide our bodies with a variety of vitamins, minerals and antioxidants to keep our immune systems healthy throughout the winter period. Combining ingredients such as kale, spinach, broccoli, beetroot, brussel sprouts, apples and berries provide the body with high levels of vitamins, minerals and antioxidants, which keep our immune system healthy. Add in some ginger and garlic and you’ve really got yourself a winter warmer. Sonia Tzerefos N.D Naturopath, Western Herbalist, GAPS Practitioner Specialising in children, in areas such as Autism, ADD, ADHD, behavioural issues, digestive disorders and recurrent illness. www.abetteryou.com.au sonia@abetteryou.com.au
Drink ME! Cold and Flu Tonic If you’re starting to feel a cold coming on, whip up a batch and treat yourself to this delicious and soothing tonic. It will keep in the fridge for up to three days. What you need: Ä‘ĆŤÄ…ĆŤ (+2!/ĆŤ+"ĆŤ# .(% Ä‘ĆŤĆŤÄ‚ĆŤ( .#!ĆŤ/,++*/ĆŤ+"ĆŤ$+*!5ƍĨ1/!ĆŤ(+ ((5ĆŤ/+1. ! ĆŤ$+*!5ĆŤ%"ĆŤ possible) Ä‘ĆŤÄ )ĆŤ,%! !ĆŤ+"ĆŤ".!/$ĆŤ01.)!.% Ä‘ĆŤÄ‚ )ĆŤ,%! !ĆŤ+"ĆŤ".!/$ĆŤ#%*#!. Ä‘ĆŤĹ˜ĆŤ0/,ĆŤ 5!**!ĆŤ,!,,!. Ä‘ĆŤÄƒĆŤ( .#!ĆŤ+. *#!/ÄŒĆŤ,!!(! ĆŤ * ĆŤ !ÄĄ/!! ! What to do: Whiz all the ingredients in the blender and enjoy. Bone Broth There is a bit of a buzz around bone broth at the moment, and for good reason. It’s cheap, easy to make, boosts your immunity, provides plenty of nutrients when you’re feeling too unwell for solid foods and tastes great. The ‘magical’ elixir provides minerals such as calcium, magnesium and phosphorus; glucosamine for inflammation and joint repair; gelatine to help heal a leaky gut; collagen; and amino acids glycine and proline; which are brilliant for a healthy immune and balanced nervous system. A cup a day will go a long way to keeping you and your family healthy and looking great, too. What you need: Ä‘ĆŤĆŤ +*!/Ä‹ĆŤ .5ĆŤ0+ĆŤ/+1. !ĆŤ#. //ĆŤ"! ĆŤ * ĆŤ+.# *% ĆŤ%"ĆŤ,+//% (!Ä‹ĆŤ Just ask your butcher. Ä‘ĆŤĆŤÄ‚ĆŤ0 /,ĆŤ ,,(!ĆŤ % !.ĆŤ2%*!# .ƍĨ0$%/ĆŤ$!(,/ĆŤ!40. 0ĆŤ0$!ĆŤ minerals from the bones). Ä‘ĆŤ %(0!.! ĆŤ3 0!.Ä‹ Ä‘ĆŤĆŤ ,0%+* (Ä? Aromatics and flavourings such as: onion, carrots, celery, garlic, ginger, pepper, salt, herbs, spices. What to do: Roast your bones in a 180 degree oven for 30 minutes. Put the bones in a large stock pot and fill with water. Add the apple cider vinegar and any aromatics or seasonings. I don’t bother to chop the veggies – I just peel or clean and cut them up roughly. If you are using fresh herbs, add them right near the end of the cooking time.
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Winter Health Feature Bring your broth to the boil and then simmer gently. Some scum may rise to the surface (the amount usually depends on the quality of the bones). You can skim this off, if you like. Cook, covered, for 12-24 hours, depending on the type of bones you’ve used. Chicken bones break down quickly, whereas beef bones take quite a bit lot longer. When you can see the bones look a little ‘spongy’ you know it’s done. Sieve your broth and cool quickly. If you’d like to remove the fat, wait till the broth has cooled and remove the solidified fat from the top. Don’t be horrified if it looks quite solid or wobbly, like jelly. That’s the gelatin from the bones and a sign of a good broth. When you heat it up it will liquefy again. Heat to serve. Broth can last up to five days in the fridge, or freeze in portions. * Tips: I cook mine in my slow cooker so I don’t have to worry about leaving my stove top on unattended.
warming and will definitely chase away the winter blahs. You can play around with spices such as cinnamon, cardamom, nutmeg or even add a touch of vanilla for some variety. Enjoy daily. What you need: đƫƫĂƫ 1,/ƫ+"ƫ + +*10ƫĨ+.ƫ ()+* ĩƫ)%(' đƫƫāƫ0/,ƫ,+3 !.! ƫ01.)!.% ƫĨ+.ƫā )ƫ".!/$Čƫ0$%*(5ƫ/(% ! ƫ+.ƫ diced) đƫƫāƫ0/,ƫ,+3 !.! ƫ#%*#!.ƫĨ+.ƫā )ƫ".!/$Čƫ0$%*(5ƫ/(% ! ƫ+.ƫ % ! ĩ đƫƫ ƫ/,.%*'(!ƫ+"ƫ ( 'ƫ,!,,!.ƫĨ0$!ƫ,!,,!.ƫ$!(,/ƫ /+.,0%+*ĩ đƫƫāƫ0/,ƫ$+*!5ƫĨ+.ƫ0+ƫ0 /0!ĩ What to do: Put the milk into a saucepan on the stove and add the spices. If using powdered spices, stir vigorously until dissolved. Bring to a slow simmer and watch carefully so the milk doesn’t boil over. After about five minutes, switch off the heat and allow the spices to steep for 10 minutes. Strain. Add honey. Makes enough for two.
* If your kids aren’t keen on drinking the broth, you can use it as a stock for soups, spag bol or casseroles.
Apple Cider Vinegar
Turmeric (Golden) Milk
Drink a tablespoon of apple cider vinegar in a small glass of warm water every morning to alkalise your body and keep the bugs away!
Turmeric. This brightly coloured root, a mainstay of Indian cooking, has recently become extremely popular with the health and wellness crowd. Traditionally used to treat just about everything, it is the go-to spice for inflammation and is brilliant for colds, congestion, sore throats and even depression. Mixed with ginger in this powerhouse of a drink, it is comforting,
Honey A teaspoon of honey can soothe a tickly throat or cough.
Colds and flus In spite of all your best intentions, efforts and hefty doses of bone broth, there are times when that one bug just catches hold. What’s the story?
Colds and influenza (flu) There are over two hundred strains of virus that cause colds, which is why we can catch so many. Adults have on average 2-4 and children 5-10 a year. You can catch a cold at any time of the year but winter is we tend to have the majority of them, probably because we are inside more and have closer contact to other people who may be infected. Colds are spread via droplets of saliva from an infected person. The tiny droplets, sprayed when the infected person coughs or sneezes, can either land onto another person; or onto a surface, where they can be spread by hand.
Symptoms of a cold can include: đƫƫ/+.!ƫ0$.+ 0 đƫƫ"!2!.ƫĨ ƫ0!),!. 01.!ƫ+"ƫăĉƫ !#.!!/ƫ !(/%1/ƫ+.ƫ +2!ĩ đƫƫ/*!!6%*# đƫƫ (+ '! ƫ+.ƫ.1**5ƫ*+/! đƫƫ +1#$ Influenza comes in three strains: A, B and C. Different strains mutate over time, and the flu vaccines are updated to reflect this. Symptoms can be similar to those of a cold but they usually start more abruptly, you feel more unwell and it can result in hospitalisation, or even death. Due to the potential severity of influenza, it is recommended you have a vaccination if you are medically compromised, or care for someone who is.
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So, if antibiotics won’t help, what will?
Symptoms of influenza (flu) include: Ä‘ĆŤĆŤ/1 !*ĆŤ"!2!.ĆŤ3%0$ĆŤ ĆŤ0!),!. 01.!ĆŤĆŤ +"ĆŤÄƒÄ‰ĆŤ !#.!!/ĆŤ !(/%1/ĆŤ+.ĆŤ +2!ĆŤ
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Do we need antibiotics? As colds and flus are caused by viruses, antibiotics will not cure them. There is an anti-viral drug on the market that can be prescribed for influenza but its effectiveness has been highly debated. Sometimes colds and flus can linger and the fluid remaining, especially in the smaller passages and airways of a small child, can cause a secondary, bacterial infection and this is why sometimes you will have an antibiotic prescribed. Just because your doctor doesn’t prescribe antibiotics, doesn’t mean your child is not unwell, it just means that an antibiotic won’t be able to help, and in fact, can cause harm. Over-prescription of antibiotics has caused the rise of antibiotic-resistant superbugs. Antibiotics also kill all the bacteria in your gut, not just the ones causing the illness, which can lead to yeast infections and a lowering of immunity. If your child is prescribed antibiotics make sure to: đƍƍ %2!ƍ0$!)ƍ/+)!ƍ,.+ %+0% /ƍĨ!%0$!.ƍ 2 %( (!ƍ".+)ƍ0$!ƍ pharmacy/health food store or in fermented foods such as sauerkraut, kefir and yoghurt) to replace the good bacteria that have also been destroyed. You will need to give the probiotics at a different time to the antibiotics and continue after you have finished the course – otherwise the meds will just kill all the good bacteria you’re introducing and won’t make any difference.
Ä‘ĆŤĆŤ (!*05ĆŤ+"ĆŤ.!/0Ä‹ Ä‘ĆŤĆŤ 2!.ĆŤ0$!ĆŤ +1*0!.ĆŤ)! % 0%+*/ĆŤ *ĆŤ$!(,ĆŤ0$!ĆŤ/5),0+)/ÄŒĆŤ 10ĆŤ won’t shorten the duration. Check with the pharmacist/ naturopath before giving any medication, herbal or otherwise, to your child in case they could react with other medication they are on or are not suitable for children. Ä‘ĆŤĆŤ (!*05ĆŤ+"ĆŤĂ˝1% /Ä‹ Remember to see your doctor if you, or your child, has cold or flu-like symptoms and: Ä‘ĆŤĆŤ/5),0+)/ĆŤ( /0%*#ĆŤ(+*#!.ĆŤ0$ *ĆŤÄ Ä€ĆŤ 5/ Ä‘ĆŤĆŤ ĆŤ +1#$ĆŤ( /0%*#ĆŤ(+*#!.ĆŤ0$ *ĆŤÄƒĆŤ3!!'/ Ä‘ĆŤĆŤ $!/0ĆŤ, %* Ä‘ĆŤĆŤ .! 0$%*#ĆŤ %Ăž 1(0%!/ Ä‘ĆŤĆŤ ĆŤ. /$ĆŤ3%0$ĆŤ"!2!. Ä‘ĆŤĆŤ5+1ĆŤ .!ĆŤ3+..%! If you are ever worried in the middle of the night or can’t get through to your doctor, you can call health direct on 1800 022 222, 24 hrs a day, seven days a week to speak to a registered nurse. Tips to keep colds and flus from spreading: Ä‘ĆŤĆŤ /$ĆŤ5+1.ĆŤ$ * /ĆŤ.!#1( .(5ĆŤ * ĆŤ'!!,ĆŤ5+1.ĆŤ$ * /ĆŤ 3 5ĆŤ from your mouth Ä‘ĆŤĆŤ +*Äš0ĆŤ/$ .!ĆŤ0+3!(/ĆŤ+.ĆŤ 1,/ Ä‘ĆŤĆŤ +2!.ĆŤ5+1.ĆŤ)+10$ĆŤ * ĆŤ*+/!ĆŤ3$!*ĆŤ/*!!6%*#ĆŤ * ĆŤ coughing (use a tissue or the crook of your elbow, rather than your hands Ä‘ĆŤĆŤ %/%*"! 0ĆŤ/1." !/ Ä‘ĆŤĆŤ /!ĆŤ %/,+/ (!ĆŤ0%//1!/ĆŤ * ĆŤ0$.+3ĆŤ0$!)ĆŤ 3 5ĆŤ "0!.ĆŤ1/!Ä‹ĆŤĆŤ
đƍƍ %*%/$ƍ0$!ƍ +1./!ƍĢƍ!2!*ƍ%"ƍ5+1.ƍ $%( ƍ/!!)/ƍ3!((ƍ !"+.!ƍ the end of it. The Centre of Disease Control has put together a chart of common illnesses and whether or not they require antibiotics:
a Weleda cold and flu package valued at $70 including Echinacea liquid, throat relief oral spray and flu pilules. Enter online at www.sourcekids.com.au/competitions
Founded by humanitarian and philosopher Rudolf Steiner in 1921 Weleda strives to source only the finest ingredients from biodynamic, organic and wild crafted suppliers. Weleda has over 120 products in the range, covering skin care, body care, oral care, mother and baby and natural medicines – all certified natural and organic, ethical and sustainable. For more information visit www.weleda.com.au
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Winter Health Feature
Free Downloadable e-kit! Get off the Sickness Cycle – Heidi Hosking If you are looking for some additional tips on how to keep your family healthy this winter you can go to www.thehealthycaterpillar.com/get-off-sickness-cycle to download the free e-kit, Get off the Sickness Cycle. Written by Heidi Hosking who is a Speech Pathologist, Health Coach, Source Kids contributor and mum of two,
this e-kit will give you 11 steps to build your child’s immunity. It comes with real world tips, recipes and a Take Action sheet so you can get clear on your very first step towards less snotty days and getting more potential from your child.
Bring back the colour: banishing the winter blues Winter brings more with it than just chilly mornings and cravings for hot soup. Winter is also a time of year known to increase the risk of low mood, depression and anxiety with some experiencing severe symptoms associated with seasonal depression (known as Seasonal Affective Disorder [SAD]). Although the ‘Winter Blues’ can be felt by most at times throughout the colder months, seasonal depression is more severe and often affects people year after year during winter. Seasonal Affective Disorder (SAD) is more common in women, for those who live in regions where winter daylight is greatly shortened and for people who have a close relative with SAD. SAD presents with similar symptoms to depression except that it is experienced during some seasons and not in others. It is thought that SAD is experienced due to the reduction in exposure to sunlight during winter months, which may disrupt circadian rhythms (sleep/wake patterns and other biological rhythms) and impact on serotonin levels, which can affect mood. If you are experiencing SAD you may: Ä‘ĆŤĆŤ !!(ĆŤ/ ÄŒĆŤ%..%0 (!ĆŤ+.ĆŤ *4%+1/ Ä‘ĆŤĆŤ +/!ĆŤ%*0!.!/0ĆŤ%*ĆŤ0$%*#/ĆŤ0$ 0ĆŤ5+1ĆŤ3+1( ĆŤ*+.) ((5ĆŤ!*&+5 Ä‘ĆŤĆŤ +0% !ĆŤ $ *#!/ĆŤ0+ĆŤ5+1.ĆŤ ,,!0%0!ĆŤ * ĆŤ3!%#$0 Ä‘ĆŤĆŤ (!!,ĆŤ)+.!ĆŤ 10ĆŤ/0%((ĆŤ"!!(ĆŤ0%.! Ä‘ĆŤĆŤ 2!ĆŤ0.+1 (!ĆŤ +* !*0. 0%*#ĆŤ A consultation with your GP is the best place to start if you are experiencing these symptoms. Even though SAD is not experienced by the majority of people, for parents of children with special needs winter can bring with it additional worry and anxiety; conjuring images of illness, hauling wheelchairs or modified strollers through rain or snow and wrestling children into countless layers of flannelette, knitted garments or thermal leggings. Is it any wonder that staying indoors hiding under the covers seems like the preferable choice? The good news is that there are many ways to banish the winter blues and bring back some colour to keep you going until spring.
Get Moving! Exercise is a powerful tool to combat low mood and anxiety. Ä‘ĆŤĆŤ +*/% !.ĆŤ&+%*%*#ĆŤ ĆŤ#5)ÄŒĆŤ/,+.0%*#ĆŤ0! )ĆŤ+.ĆŤ/0 .0%*#ĆŤ1,ĆŤ ĆŤ walking group. Ä‘ĆŤĆŤ .5ĆŤ+10ĆŤ5+# ÄŒĆŤ %( 0!/ĆŤ+.ĆŤ)! %0 0%+*ĆŤ".+)ĆŤ0$!ĆŤ +)"+.0ĆŤ+"ĆŤ your living room. Ä‘ĆŤĆŤ !!,ĆŤ *ĆŤ!5!ĆŤ+10ĆŤ"+.ĆŤ 0%2%0%!/ĆŤ%*ĆŤ5+1.ĆŤ(+ (ĆŤ .! ĆŤ0$ 0ĆŤ make the most of the winter conditions. Museums, theatres, indoor play centres and libraries are great places to take the kids if the weather demands and indoor activity. Eat and Be Merry! Ä‘ĆŤĆŤ !0ĆŤ .! 0%2!ĆŤ3%0$ĆŤ5+1.ĆŤ3%*0!.ĆŤ! 0/Ä‹ĆŤ $5ĆŤ*+0ĆŤ0.5ĆŤ+10ĆŤ ĆŤ themed dinner party and invite friends or family around to get involved? Christmas in July, Winter Wonderland or ‘Bring a Soup’ themes can bring people together and brighten up a cold or dreary evening. Ä‘ĆŤĆŤ '!ĆŤ ĆŤ0.%,ĆŤ0+ĆŤ5+1.ĆŤ(+ (ĆŤ) .'!0/ĆŤ * ĆŤ/0+ 'ĆŤ1,ĆŤ+*ĆŤ seasonal produce to inspire some healthy and hearty winter meals. Create! Ä‘ĆŤĆŤ $ ((!*#!ĆŤ5+1./!("ĆŤ0+ĆŤ(! .*ĆŤ ĆŤ*!3ĆŤ/'%((ÄŒĆŤ3$!0$!.ĆŤ%0ĆŤ !ĆŤ drawing, painting, scrapbooking, knitting or learning a musical instrument. Adult colouring books are a popular craft item at the moment, helping to reduce stress and mental fatigue through mindful creativity. Ä‘ĆŤĆŤ +%*ĆŤ+.ĆŤ/0 .0ĆŤ ĆŤ . "0ĆŤ#.+1,ĆŤ+.ĆŤ ++'ĆŤ (1 ĆŤ0+ĆŤ +**! 0ĆŤ3%0$ĆŤ likeminded people. Reach Out! Ä‘ĆŤĆŤ . 0% !ĆŤ/!("ÄĄ .!Ä‹ĆŤ !!'ĆŤ+10ĆŤ0$!ĆŤ+,,+.01*%05ĆŤ0+ĆŤ$ 2!ĆŤ ‘me time’ whether that be through formal or informal respite it is important to make yourself a priority. Ä‘ĆŤĆŤ "ĆŤ0$!ĆŤ %*0!.ĆŤ (1!/ĆŤ .!ĆŤ#!00%*#ĆŤ5+1ĆŤ +3*ĆŤ.! $ĆŤ+10ĆŤ"+.ĆŤ support from your GP, family, friends or support services such as Beyondblue and Lifeline. Zalia Powell Social Worker (BSW Hons)
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Kidz was the first Australian organisation established to provide financial assistance and support solely to families with children who have WHS or a 4P deletion. Funds raised by 4P Aussie Kidz contribute towards costly items that could help improve the life of a child with WHS, such as standing and walking frames, car seats, communication devices, wheelchairs and private therapy.
Our favourite places to go as a family is:
Our family consists of: Luke Melissa Ellie (7) Cooper (3) Max and Grace (Cats) and Coco (Dog) We live: We live in Melbourne, not far from beautiful beach locations
Our daughter is dealing with the following disabilities: Our daughter Ellie, who is turning eight in August, was born with a rare (1:50) genetic condition called Wolf Hirschhorn Syndrome. Wolf Hirschhorn Syndrome (WHS) refers to a condition that is the result of a genetic error on chromosome 4. This effects Ellie in multiple ways: she is non-verbal, has low muscle tone, is unable to walk unaided (but is super determined to try, and gets a good pace in her walker), she has delayed development; and has seizures. However, like most kids with WHS, she is extremely giving, loving, happy, chilled out and just loves people. She also has another rare condition, Anophthalmos (born without her right eye).
How we manage this: Ellie’s condition is managed many ways. She attends Bayside Special Development School in Moorabbin and she is doing amazingly well there. She is also managed by a team of therapists, and specialists, managing the different parts of her condition. As a family however, we are always researching and on the look-out for different pieces of equipment, therapy, and funding that will help Ellie achieve the best that she can. Also, in 2010, our family started a not-for-profit called 4P Aussie Kidz, as we found there was lack of support and funding available for kids with this rare condition. 4P Aussie
We love to go to the walking path down at the beach near us. It is something that we can all do as a family: Ellie in her stroller (or walker, if she is up for it that day), Cooper on his bike or scooter and Luke and I walking with our dog, Coco - of course with a coffee in hand. We also love going to the park, as it is somewhere that Ellie can not only enjoy herself but challenge herself, by trying to climb a ladder and practice her walking.
Our biggest challenge is: Changing people’s perceptions about disability and creating conversation and awareness about Ellie’s condition. As Ellie’s condition is an intellectual disability as well as a physical disability, it is quite obvious on meeting Ellie. Because of this, we do get many looks and comments when we are out and about with Ellie. I would like to see the looks and sniggers changed to people coming up and approaching Ellie and us as a family. We are always open to talk about Ellie’s condition and make more people aware of her condition. At the end of the day, if you put Ellie’s condition aside, deep down she is just like any other seven year old girl, who just wants to be loved, wants to have fun, and wants to interact with people.
Best parenting tip: To do what works best for you and your family… and your special needs child.
The best/most useful advice we’ve been given: To never, ever Google a diagnosis. I must say, though, that I never ever stuck to this one. When we got Ellie’s diagnosis of Wolf Hirschhorn Syndrome and Anophthalmos, I must admit that I Googled. Lots! However, another piece of advice that we received early on was to not let Ellie be defined by her diagnosis. So, as much as I Googled and researched and read a lot of awful, outdated information, we never just accepted that Ellie would just be WHS. She was a beautiful girl first and WHS was just a condition that she had. It has never defined her. Ellie is defined by: determination, love, smiles and the ability to just keep going, even when sometimes we feel like giving up.
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And the most annoying/unhelpful advice (there’s always one):
People/Businesses We Love
Very early on in Ellie’s journey, we were given some advice from a medical professional that was not so helpful. Basically it was along the lines of not expecting too much from Ellie. If we had listened to that horrendous advice, Ellie would not be where she is today.
đƍƍPaediatrician – Dr Lexie Frydenberg at Victorian Children’s Clinic
This journey has taught us:
đƍƍSpeech Therapy – Sally Smallwood
To appreciate and acknowledge the smaller things in life which might mean shouting from the roof-tops about achievements that may be small for other kids but huge for our Ellie.
đƍƍWaves Leisure Centre (Highett) – Waves runs swimming lessons for kids with special needs. This would be Ellie’s favourite time of the week - letting out loud shrieks when she sees her bathers.
đƍƍGP – Dr Careen Jansen at Beaumaris Medical Centre
đƍƍPhysio – Physio for Kids in Mckinnon đƍƍRestaurant – Main Street CafÊ, Mordialloc - great coffee and good with the kids!
Ä‘ĆŤĆŤIRun4
We would never manage without: The amazing support of our family and friends and the network of special needs parents we have met along our journey. This network is priceless. I remember once saying when Ellie was younger that when you have a child born with special needs, it would be great if you got a handbook to help you navigate the maze that comes with it. I have now come to realise that this handbook is my network of ‘Special Needs Mums’ I have met. The information shared amongst us is not only priceless but essential to coping with our new way of life.
Products we love: đƍƍ "!ƍ 1..+1* ƍ (1/ƍ ! ƍ".+)ƍ 0!,ƍ $! ƍ ! % 0.% /ƍ This bed is AMAZING. It is like a big castle that keeps Ellie safe at night. This was needed because even though Ellie cannot walk unaided, she is a very good climber and a risk taker. She had outgrown this bed was needed as she had outgrown her cot and we needed to ensure she was safe at night and could not get out. đƍƍ .'ƍ %,ĥ 1, This is a brilliant cup with a straw. If you child is unable to suck, you can actually squeeze the bottle and fluid comes up through the straw. đƍƍ %#$0ƍ0%)!ƍ(%#$0ƍ1,ƍ0+5/ We have a couple of these and they come in various designs. Basically it is anything that projects lights and colours onto the ceiling in Ellie’s room at nighttime.
Ä‘ĆŤĆŤ 0!2!ĆŤ 1#$ĆŤ Foundation What this organisation does is amazing! They support many children with rare conditions, who most of the time get lost in the system and receive minimal to no funding or support for vital equipment, therapy and treatments.
Safe Surround Beds Take the nightmare out of night time!
SUPERIOR ENVIRONMENT FOR CHILDREN WITH SPECIAL NEEDS Designed to allow the child to be safe and secure in a sturdy bed Built extremely stable, designed for both ambulatory and non-ambulatory children. Provides a safe environment to sleep and play, and protects the child from harming themselves. Options available to meet your child’s medical, physical and behavioural needs. Discover peace of mind!
SAFE SURROUND PLUS For Space and Safety
Delivery & Set-up Australia wide!
SAFE SURROUND GENIE Specialist Care
Ä‘ĆŤĆŤ %0 ĆŤ 1*ĆŤ !! %*#ĆŤ $ %. We LOVE this chair. It is a feeding chair that allows Ellie to be part of so many different environments when seated as it has a wheeled base, and has a gas spring mechanism for height adjustment and can be lowered to floor level.
Versatile bed, ideal for the patient who is non-ambulatory and needs a secure safe bed to sleep in and receive care. Safety rail height stays consistent when the bed is raised and lowered.
Ä‘ĆŤĆŤ 3%"05ĆŤ 0.+((!. Easy to push, lightweight, and super funky looking. Ä‘ĆŤĆŤ +5/ The Wiggles Rock A Bye Bear Plush singing toy and Fisher Price Bright Beats Dance and Move Beat Bo.
Contact Medifab to discuss how we can solve your night time needs with Safe Surround Beds: Call: 1300 543 343 Email: solutions@medifab.com www.medifab.com.au/safenight
The caregiver’s friend, with height adjustment, easy access and ease of cleaning under the bed.
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Rare Disease in Profile
Rett Syndrome Rett Syndrome is a neurodevelopmenal disorder that affects girls almost exclusively and is as rare as one in 10,000-15,000. Children with Rett usually have normal early growth and development but that slows, with the severity of symptoms varying from child to child. There are often subtle abnormalities even in early infancy, such as loss of muscle tone, difficulty feeding, and jerkiness in limb movements, problems crawling or walking and diminished eye contact. As it progresses, symptoms include the loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability (see breakout of stages right). It can be hard to diagnose and can often be misdiagnosed as Prada-Willi Syndrome, Angelman Syndrome, ASD or CP in the early stages. Nearly all cases of Rett Syndrome are caused by a mutation in the methyl CpG binding protein 2, or MECP2 gene which contains instructions for the synthesis of a protein that’s needed for brain development. Less than one percent of recorded cases are inherited or passed from one generation to the next. Children with Rett syndrome often exhibit autistic-like behaviours in the early stages. Other symptoms may include walking on the toes, sleep problems, a wide-based gait, teeth grinding and difficulty chewing, slowed growth, seizures, cognitive disabilities, and breathing difficulties while awake such as hyperventilation, apnea (breath holding), and air swallowing. There is no cure for Rett Syndrome but early intervention can make a difference, with paediatricians, physiotherapists, occupational therapists and speech pathologists all able to assist. Rett sufferers are eligible for the NDIS and Better Start funding for help with services and support. More information and links to different organisations/ support groups can be found at www.rettaustralia.com
Stages of the disorder 1: Early onset. Typically begins between six and 18 months of age. It is often overlooked because symptoms of the disorder may be somewhat vague, and parents and doctors may not notice the subtle slowing of development at first. The infant may begin to show less eye contact and have reduced interest in toys. There may be delays in gross motor skills such as sitting or crawling. Hand-wringing and decreasing head growth may occur but not enough to draw attention. This stage usually lasts for a few months but can continue for more than a year. 2: Rapid destructive stage. Usually begins between ages one and four and may last for weeks or months. Its onset may be rapid or gradual as the child loses purposeful hand skills and spoken language. Some girls also display autisticlike symptoms such as loss of social interaction and communication. Walking may be unsteady and initiating motor movements can be difficult. Slowed head growth is usually noticed during this stage. 3: The plateau or pseudo-stationary stage. Usually begins between ages two and 10 and can last for years. Apraxia, motor problems, and seizures are prominent during this stage, however, there may be improvement in behaviour, with less irritability, crying, and autistic-like features. A girl in stage III may show more interest in her surroundings and her alertness, attention span, and communication skills may improve. Many girls remain in this stage for most of their lives. 4: Late motor deterioration stage. It can last for years or decades. Prominent features include reduced mobility, curvature of the spine (scoliosis) and muscle weakness, rigidity, spasticity, and increased muscle tone with abnormal posturing of an arm, leg, or top part of the body. Girls who were previously able to walk may stop walking.
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Fleur tackles Rett Syndrome head on A cruel rare disease stole Fleur Barron’s ability to walk and talk before she even had the chance to learn the basic baby milestones, but the Melbourne three-year-old is tackling her Rett Syndrome with determination and patience. Her mum Sarah says that unlike most cases of Rett, where children have an initial period of normal development, things were never that normal with Fleur.
“She is able to sit independently for only short periods of time before she falls over,’’ details Sarah. “She can’t use her hands, so can’t play with toys or feed herself. At kinder she uses modified equipment, like a modified paint brush and bendy pens so she can engage in the same activities as the other children in her class.’’ Fleur is also non-verbal, but Sarah says she has the full range of emotions.
“She was diagnosed with hip dysplasia at eight weeks of age and spent three months in a Pavlik Harness,’’ Sarah explains.
“She gives beautiful hugs and kisses, and her smiles melt our hearts,’’ she says.
“This meant she was never able to move her body like other children her age, and her physical development was always going to be delayed. Despite this she was a normal baby, a good feeder, very alert and interactive, loved playing with toys, had an excellent pincer grip and hand coordination, and lots of babble.
“I’m certain she understands everything. She has a sound for yes and no, and is able to say yes and no by nodding and shaking her head.’’
“She had the Pavlik Harness removed when she was six months old and progressed slowly – learned to roll both sides and sit independently (but) never progressed to pulling herself up. She learned to crawl, but it was more of a creep than a conventional crawl. She also began to have ‘vacant spells’, where she would avoid eye contact and withdraw. “When she turned one, I absolutely knew something was not right, and made an appointment to see a paediatrician. Looking back on things, this was the start of her period of regression. “As time went by, the regression became more obvious. Fleur ground her teeth and started to put her right hand in her mouth and tap her right hand or wrist with her left hand. This repetitive hand movement happened overnight, and to this day is constant and compulsive. Fleur was also very irritable during the regression period, she lost the ability to hold toys and feed herself, stopped creeping around the house, and stopped saying the small number of words she had begun to say, almost as quickly as she had started saying them.’’ For Sarah and husband Dan it was a frustrating and upsetting time - given the joy they had experienced watching their first daughter, Eva (now 6), developing. The diagnosis period “took forever’’ - Fleur would be almost three before they found out she had a mutation in the MECP2 gene. As a result, Fleur is not able to stand or walk.
Fleur is learning to communicate using a PODD communication book and a Tobii eye gaze computer. “Sometimes there are moments of wonderful clarity, where she will blow me away with a message or messages that are so clever,’’ Sarah proudly states. Fleur attends the Cerebral Palsy Education Centre two mornings a week to receive intensive physio, OT and speech therapy - activities that Fleur takes part in with patience and determination. She also attends two half days at a local mainstream kinder and ‘a divine’ little playgroup that supports children with special needs. “This magical day gives me a few hours to myself and I am comforted knowing she has her own helper,’’ Sarah says. She admits it took some time to feel at peace with the situation. “In the early days of knowing there was something not right with my daughter I felt so heart broken. I found it difficult to look at families with healthy children,’’ Sarah says. “It’s a bit of a cliché to say that Fleur has taught me so much and I wouldn’t change things. If I could, I would absolutely change things and give her the life of a normal healthy child - one that she deserves. But, Fleur has taught me so much – how to love unconditionally, how to not sweat the small stuff, how to cherish all the wonderful things I do have in my life. I have met amazing people on this journey, some who are friends forever and who I would not have met it is wasn’t for Fleur. “I find it helpful to have high hopes and expectations for Fleur, rather than to dwell on what her limitations are.’’ And her advice for others in similar situations. “Be brave, don’t look too far ahead and take each day as it comes.’’
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PERFECTIONISM ‌ is it debilitating my child? Perfectionism is simply an image we create of how we expect something to happen. Does your child ever: Ä‘ĆŤĆŤ !((ÄŒĆŤ/ .! )ĆŤ * ÄĽ+.ĆŤ$ 2!ĆŤ ĆŤ0 *0.1)ĆŤ/%),(5ĆŤ ! 1/!ĆŤ5+1ĆŤ correct them? Ä‘ĆŤĆŤ 2!ĆŤ ĆŤ) &+.ĆŤ)!(0 +3*ĆŤ ! 1/!ĆŤ0$!5ĆŤ % ĆŤ*+0ĆŤ3%*ĆŤ ĆŤ game? Ä‘ĆŤĆŤ !*/!ĆŤ0$!%.ĆŤ3$+(!ĆŤ + 5ĆŤ3$!*ĆŤ0$!5ĆŤ.! !%2!ĆŤ"!! 'ĆŤ+*ĆŤ how they could do something differently? Ä‘ĆŤĆŤ (+ 'ĆŤ0$!%.ĆŤ! ./ĆŤ * ĆŤ5!((Ä?ĆŤÄ— ĆŤ (.! 5ĆŤ'*+3Ä˜ÄŒĆŤ3$!*ĆŤ !%*#ĆŤ taught a new concept? Ä‘ĆŤĆŤ !!(ĆŤ+2!.3$!()! ĆŤ ! 1/!ĆŤ0$!5ĆŤ3!.!ĆŤ0+( ĆŤ3$ 0ĆŤ0$!5ĆŤ % ĆŤ was wrong? Ä‘ĆŤĆŤ 4,!.%!* !ĆŤ ĆŤ0%#$0ĆŤ $!/0ĆŤ3$!*ĆŤ0!/0/ĆŤ+.ĆŤ,!."+.) * !/ĆŤ were happening? Ä‘ĆŤĆŤ !!(ĆŤ !2 /0 0! ĆŤ3$!*ĆŤ&1 #! ĆŤ*!# 0%2!(5Ä•ĆŤ Ä‘ĆŤĆŤ !!(ĆŤ %/0.!//! ĆŤ +10ĆŤ(! 2%*#ĆŤ0$!ĆŤ$+1/!ĆŤ ! 1/!ĆŤ0$!%.ĆŤ outfit or hair might not be ‘perfect’? Ä‘ĆŤĆŤ 0.1##(!ĆŤ0+ĆŤ) '!ĆŤ ĆŤ ! %/%+*ĆŤ ! 1/!ĆŤ0$!5ĆŤ)%#$0ĆŤ) '!ĆŤ the wrong choice? Ä‘ĆŤĆŤ *(5ĆŤ, .0% %, 0!ĆŤ%*ĆŤ0$%*#/ĆŤ0$!5ĆŤ (.! 5ĆŤ'*!3ĆŤ0$!5ĆŤ .!ĆŤ good at? Ä‘ĆŤĆŤ %* ĆŤ%0ĆŤ %Ăž 1(0ĆŤ0+ĆŤ) '!ĆŤ ĆŤ ! %/%+*ƍĨ3$ 0ĆŤ%"ĆŤ%0Äš/ĆŤ3.+*#Ä•ÄŠÄ• Ä‘ĆŤĆŤ .5ĆŤ0+ĆŤ !ĆŤÄ™.%#$0Ěƍ ((ĆŤ0$!ĆŤ0%)!ĆŤ * ĆŤ$+( ĆŤ 'ĆŤ".+)ĆŤ /'%*#ĆŤ questions in case they are seen as ‘wrong’ or ‘not already knowing’?
BEHAVIOUR SPECIALIST Multi-Disciplinary Centre Psychology ~ Behaviour Specialist Services ~ Speech Pathology ~ Occupational Therapy ~ Counselling
A perfectionist mind creates certain expectations: Ä‘ĆŤĆŤ ĆŤ/$+1( ĆŤ#!0ĆŤÄ Ä€ÄĽÄ Ä€ĆŤ%*ĆŤ)5ĆŤ!4 )Ä“ Ä‘ĆŤĆŤ ĆŤ3 *0ĆŤ)5ĆŤ$ %.ĆŤ0+ĆŤ !ĆŤ,!."! 0ĆŤ !"+.!ĆŤ ĆŤ(! 2!ĆŤ0$!ĆŤ$+1/!Ä“ Ä‘ĆŤĆŤ ĆŤ!4,! 0ĆŤ0$ 0ĆŤ0$!ĆŤ,!./+*ĆŤ3%((ĆŤ !ĆŤ+*ĆŤ0%)!ĆŤ ! 1/!ĆŤ0$ 0ĆŤ%/ĆŤ what they said! Ä‘ĆŤĆŤ ĆŤ*!! ĆŤ5+1ĆŤ0+ĆŤ'*+3ĆŤ0$ 0ĆŤ ĆŤ'*+3ĆŤ!2!.50$%*#ĆŤ (.! 5Ä“ Ä‘ĆŤĆŤ ĆŤ!4,! 0ĆŤ0+ĆŤ3%*ĆŤ+.ĆŤ#+ĆŤĂź./0ĆŤ!2!.5ĆŤ0%)!ĆŤ3!ĆŤ,( 5ĆŤ ĆŤ# )!Ä“ When these expectations aren’t met exactly as expected anxiety can be triggered, which leads to unwanted behaviours. Perfectionism is contributing to increased cases of low self-esteem, anxiety, stress and is also impacting on learning outcomes and behaviours in the classroom. It also can cause people to ‘choose to fail’ – that is, choosing not to try at all because they are so concerned that the outcome may not be perfect. While perfectionism is nothing new, I am noticing it is becoming more common, increasing in intensity and affecting many individuals, their families and society as a whole. Perfectionism is striving for the impossible – wanting our ‘doing’ to always be ‘perfect’. This is the ultimate trap as seeking acceptance from self and others based on our actions is a guarantee for failure. There is always going to be something we can’t do perfectly. While we strive for perfectionism in our doing, we are guaranteeing a state of anxiety, which in turn leads to the use of unwanted behaviours. Tanya Curtis - Fabic Behaviour Specialist www.fabic.com.au
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We
ONLINE e lov
Blog Instagram We’ve been to … The Wheel Foodie www.instagram.com/thewheelfoodie
We’ve been to … www.10feettall.org Mum, Kelly Wilton (who led the change.org special needs trolley drive), is blogging about her son’s journey with HHE – a rare form of epilepsy.
Cooper Smith, our brand-new columnist, and intrepid traveller and foodie, posting about, you guessed it, food and his travels.
Pinterest We’ve been to … Cheap Sensory Room Ideas www.pinterest.com/marmarhughes/cheap-sensoryroom-ideas Enough projects to keep you busy for the whole of winter – a DIY sensory room all on one page.
Website We’ve been to … www.childcarseats.com.au Seriously everything you need to know about car seats. If you aren’t a car seat nerd already, you’re only a click away from an entirely new reality.
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DIRECTORY AIDS AND EQUIPMENT EDSCO Education Supply Company Pty Ltd
50 Yiada Street Kedron QLD
07 3350 2677
www.edsco.com.au
Korthotics
5/10 George Street Leichhardt NSW
02 9569 3672
www.korthotics.com.au
Link AT
Level 3, 169 Fullarton Road Dulwich SA
08 8330 4102
www.linkassisttive.com
Medifab
26 Pardoe Street East Devonport TAS
1300 543 343
www.medifab.com.au
Ninja Babies
9 Merimist Way Kiels Mountain QLD
0422 068 159
www.ninjababies.com.au
R82
PO Box 284 Botany NSW
02 8213 6666
www.r82.com.au
Special Needs Solutions
Unit 4/15 Industrial Avenue Molendinar QLD
07 5597 4321
www.specialneedssolutions.com.au
Unique Care
9-11 Point Henry Road Moolap VIC
03 5248 8369
www.uniquecare.com.au
Little Big Feet
6/2069 Moggill Road Kenmore QLD
07 3378 5935
www.littlebigfeet.com.au
Wonsie Bodysuits
Sydney NSW
0409 309 129
www.wonsie.com.au
JettProof
PO Box 5281 Kahibah NSW
1300 667 687
www.jettproof.com
Cleverstuff Educational Toys
Unit 26 9-12 Lambridge Place Penrith NSW
02 4708 2451
www.cleverstuff.com.au
EDSCO Education Supply Company Pty Ltd
50 Yiada Street Kedron QLD
07 3350 2677
www.edsco.com.au
Flying Fox
342 Hawthorn Road Caulfield South VIC
0404 495 111
www.flyingfox.org.au
Paediatric Therapy and Workshops
Geelong VIC
0412 751 741
www.paediatricworkshops.com.au
PO Box 96 Launceston TAS 7250
03 6332 9200
www.bellamysorganic.com.au
ESPY Connect
PO Box 3287 Valentine NSW
0416 223 957
www.espyconnect.com.au
Life Without Barriers
352 King Street Newcastle NSW
1800 WE LIVE
www.lwb.org.au
Paediatric Therapy and Workshops
Geelong VIC
0412 751 741
www.paediatricworkshops.com.au
Flying Fox
342 Hawthorn Road Caulfield South VIC
0404 495 111
www.flyingfox.org.au
Sport Inclusion Australia
4 Lowry Place Benalla VIC
03 5762 7494
www.sportinclusionaustralia.org.au
ACD (Association for Children with a Disability)
Suite 3, 98 Morang Road Hawthorn VIC
03 9818 2000
www.acd.org.au
Angelman Syndrome Association
PO Box 554 Sutherland NSW
02 8521 7463
www.angelmansyndrome.org
ARC Disability Services Inc
92 Little Street Manunda QLD
07 4046 3600
www.arcinc.org.au
Association of Genetic Support Australasia
66 Albion Street Surry Hills NSW
02 9211 1462
www.agsa-geneticsupport.org.au
Ausdocc Inc.
10 High Street Seaholme VIC
0428 579 121
www.ausdocc.org.au
Australian Kabuki Syndrome Association Inc
13 Lockwood Road Erindale SA
Australian Leukodystrophy Support Group
PO Box 2550 Mount Waverley VIC
1800 141 400
www.alds.org.au
Australian Mitochondrial Disease Foundation
Suite 4, Level 69, 13 Young Street Sydney NSW
1300 977 180
www.amdf.org.au
Autism Awareness Australia
PO Box 288 Seaforth NSW
02 9904 8700
www.autismawareness.com.au
1800 277 328
www.autismspectrum.org.au
CLOTHING AND ACCESSORIES
EDUCATION
HEALTH AND NUTRITION Bellamy’s Organic
PROFESSIONAL SERVICES
SPORT AND RECREATION
SUPPORT SERVICES
Autism Spectrum Australia (ASPECT)
www.kabukisyndromeassoc.com.au
Autism Tasmania
PO Box 514 Moonah TAS
03 6278 9985
www.autismtas.org.au
Beyond Blue
PO Box 6100 Hawthorn West VIC
1300 224 636
www.beyondblue.org.au
CARA
98 Woodville Road Woodville SA
08 8347 4588
www.cara.org.au
Cerebral Palsy Australia
Level 39, 259 George Street Sydney NSW
02 8259 7725
www.cpaustralia.com.au
Cerebral Palsy League
55 Oxlade Drive New Farm QLD
1800 272 753
www.cpl.org.au
Cerebral Palsy Support Network
525 High Street Preston VIC
03 9478 1001
www.cpsn.org.au
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CHARGE Syndrome
PO Box 91 Glenfield NSW
02 9605 8475
www.chargesyndrome.org.au
Conexu Foundation
PO Box 528 Stones Corner QLD
1300 077 321
www.conexu.com.au
Cornelia De Lange Syndrome Association (Australasia) Inc
PO Box 20 Putney NSW
02 9809 0287
www.cdlsaus.org
Cri Du Chat Support Group of Australia
104 Yarralumla Drive Langwarrin
03 9775 9962
www.criduchat.asn.au
Deaf Australia
PO Box 1083 Stafford QLD
07 3357 8277
www.deafau.org.au
Deaf Children Australia
PO Box 6466 St Kilda Road Central VIC
1800 645 916
www.deafchildrenaustralia.org.au
Down Syndrome Australia
219 Napier Street Fitzroy VIC
1300 658 873
www.downsyndrome.org.au
Epilepsy Australia
20 Charrington Court Baulkham Hills NSW
1300 852 853
www.epilepsyaustralia.net
ESPY Connect
PO Box 3287 Valentine NSW
0416 223 957
www.espyconnect.com.au
Extended Families Australia
1/95 Bell Street Coburg VIC
03 9355 8848
www.extendedfamilies.org.au
Foundation for Angelman Syndrome Therapeutics Australia
PO Box 248 Salisbury QLD
1300 078 108
www.cureangelman.org.au
Hummingbirds
179 Dart Street Redland Bay QLD
0412 363 856
www.hummingbirdseies.com
Langford Support Services
PO Box 717 Moonah TAS
03 6228 9099
www.langford.org.au
Learning Difficulties Coalition
PO Box 140 Westmead NSW
02 9806 9960
www.ldc.org.au
Lifeline
PO Box 173 Deakin ACT
13 11 14
www.lifeline.org.au
Life Without Barriers
352 King Street Newcastle NSW
1800 WE LIVE
www.lwb.org.au
Lions Club Australia
31–33 Denison Street Newcastle West NSW
02 4940 8033
www.lionsclub.com.au
Mamre Association Inc
40 Finsbury Street Newmarket QLD
07 3622 1222
www.mamre.org.au
Prader-Willi Syndrome Association
VIC
0451 797 284
www.pws.asn.au
Rare Voices Australia Ltd
Suite 2, 3 The Postern Castlecrag NSW
02 9967 5884
www.rarevoices.org.au
Rett Syndrome
PO Box 855 West Perth WA
08 9489 7790
Royal Far West
19-21 South Steyne Manly NSW
02 8966 8500
www.royalfarwest.org.au
SAKKS – Supporting Aussie Kids with Kabuki Syndrome
PO Box 318 Rundle Mall SA
0422 608 858
www.sakks.org
Spina Bifida Foundation Victoria
Level 4, Ross House, 247 Flinders Lane VIC
03 9663 0075
www.sbfv.org.au
Steve Waugh Foundation
Level 11, 17 York Street Sydney NSW
1300 669 935
www.stevewaughfoundation.com.au
St Giles
65 Amy Road Launceston TAS
03 6345 7333
www.stgiles.org.au
Syndromes Without A Name (SWAN) Australia
PO Box 390 Fairfield
0404 280 441
www.swanaus.com.au
The Fragile X Association of Australia
Suite 6, Level 3, 39 East Esplanade Manly NSW
1300 394 636
www.fragilex.org.au
The Shepherd Centre
146 Burren Street Newtown NSW
02 9370 4400
www.sherherdcentre.org.au
1300 847 466
www.visionaustralia.org
08 7329 5409
www.wsasa.org.au
Vision Australia Williams Syndrome Association of SA
83A Ridgway Drive Flagstaff Hill SA
Xavier Children’s Support Network
284 Pine Mountain Road MtGravatt East QLD
Young People in Nursing Homes National Alliance
207 City Road Southbank VIC
0437 178 078
www.ypinh.org.au
Ability First Australia
Level 39, 259 George Street Sydney NSW
1800 771 663
www.abilityfirstaustralia.org.au
AEIOU Foundation for Children with Autism
Central Office: N70 Recreation Road Nathan QLD
07 3320 7500
www.aeiou.org.au
Everyday Independence
The Nerve Centre, 54 Railway Rd, Blackburn
1300 179 131
www.everydayind.com.au
M.O.T.A. Melbourne Occupational Therapy Associates
603-605 Nicholson Street Carlton North VIC
03 9387 1734
www.melbourneot.com
Movement Solutions
1/26 Eva Street Coorparoo QLD
07 3324 2490
www.movementsolutions.com.au
Nacre Consulting
8 Steele Street South Caulfield VIC
0448 316 319
www.nacre.com.au
OCC Therapy
PO Box 118 Kenmore QLD
07 3378 9543
www.occtherapy.com.au
St Giles
65 Amy Road Launceston TAS
03 6345 7333
www.stgiles.org.au
Therapies for Kids
37 Nelson Street Annandale NSW
02 9519 0966
www.therapiesforkids.com.au
TLC Psychology P/L
Tasmania and Victoria
0410 788 844
www.tlcpsychology.com.au
92 Little Street Manunda QLD
07 4046 3600
www.arcinc.org.au
www.xcsn.org
THERAPY PROVIDERS
TOYS AND RESOURCES ARC Toy and Library Resource Centre Children’s Disability Products
0417 510 606
www.childrensdisabilityproducts.com.au
Cleverstuff Educational Toys
Unit 26 9-12 Lambridge Place Penrith NSW
02 4708 2451
www.cleverstuff.com.au
My Diffability
PO Box 3121 Caroline Springs VIC
03 8456 6613
www.mydiffability.com.au
SenseAbilities
12 Winyard Drive Mooroolbark VIC
03 9726 8047
www.senseabilities.com.au
0400 375 351
ww.thetoybug.com.au
1800 333 634
www.windmill.net.au
The Toy Bug Windmill Educational Toys and Equipment
265 Charles Street Launceston TAS
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Competition CORNER Cheeky Echidna Emergency Wrap Win one of two large packs including a Emergency Info Wrap, Emergency Info Card and a Removable Alert car tag valued at $35 each or one of four small packs containing a removable alert car tag and an emergency info card valued at $20 each. Cozy Dozee - Win one of three customized packs containing a Cozy Dozee (choice of size and gender) plus Cozy Dozee car air fresheners valued at $50 each. EZPZ Mat - Win an EZPZ Happy Mat in your choice of colour valued at $36.95 iRiNGO Blocks - WIN one of two sets of iRiNGO including the safari world (204 pieces) valued at $96.95 and the motorcycle set (131 pieces) valued at $69.95.
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WINTER 2016
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What’s on Calendar June CMV (Congenital Cytomegalovirus) Awareness Month
20-26 June
July 2 July Corpus Callosum Awareness Day
World continence week
24 June Red Nose Day
3 July Don’t dis Dance Extravaganza This great event will be held at Luna Park in Sydney with a star studded line up including Justice Crew, Prinnie Stevens, Reigan, Michaela Baranov and Reece Mastin. For more information and ticket sales look them up on Facebook!
August June 28 Little Red Riding Hood Sensory Friendly Performance Funny, cheeky and feisty, Little Red Riding Hood is a delightful mashup of ballet and creative theatrics that families will love.
5 Aug Jeans for Genes Day
Sensory Events
Arts Centre Melbourne
19 June Angry Birds Movie, BCC Cinemas Morayfield QLD
6 July
The Snail and the Whale (access friendly)
9 July
19 July
Cinderella (relaxed performance)
Driven By What’s Inside Fun and Cars event, Caboolture Showgrounds, QLD
24 July Finding Dory, BCC Cinemas Morayfield QLD 7 Aug
Sensory Tenpin Bowling, Caboolture Bowl & Mini Golf, QLD
14 Aug
Sensory Laserzone Fun, Laserzone Lawnton, Brisbane QLD
21 Aug
Ice Age Collision Course, BCC Cinemas Morayfield QLD
9 Oct
Sensory Tenpin Bowling, Caboolture Bowl & Mini Golf, QLD
More details at facebook.com/SensoryMovieDay
30 July Pete the Sheep (auslan interpreted) 6&7 July Saltbush (visual)
Bringing fun, practical and unique products to children with special needs in Australia. Australia’s newest online disability store has just launched with a great range of products including EZPZ mats, EazyHold straps, Reflo cups and Chewigem necklaces and bracelets. The range is growing daily so make sure you subscribe to receive all the latest product releases.
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