FREE
Issue 12 - Winter 2017
Accessibility Tips and insights you need to know + wheelchair review Alternative treatments – the ins and outs Puberty – what you’re too afraid to ask! Congenital muscular dystrophy Technology for fundraising
When Calories count and so does Tolerance Introducing NEW Nutrini Peptisorb Energy, the new ready to use peptide-based feed specially designed for feed intolerance, maldigestion and malabsorption. Another addition to the tried and trusted Nutricia Paediatric Range.
PBS Listed 1st May 2017
The peptide-based feed specially designed for children who need more nutrition in a smaller volume and is easier on the tummy.
4 4 4 4 4 4 4
100% Extensively hydrolysed whey protein To help Ready-to-use, liquid semi-elemental feed children meet Energy dense 1.5kcal/ml and nutritionally complete their nutritional # Contains 50% MCT needs consistently 1 1 and promote Excellent compliance and GI* tolerance healthy growth. Easy to use, convenient and well-accepted1 For children 1-10 years of age (or 8-45kg body weight)
Contact your healthcare professional for more information. (Should be used under medical supervision)
1. Data on file, Nutricia UK Ltd. 2017. * Gastrointestinal # Medium Chain Triglycerides
Nutricia Australia Pty Ltd. Talavera Corporate Centre, Level 4, Building D, 12-24 Talavera Road, Macquarie Park, NSW 2113 Clinical Care Line 1800 060 051 www.nutriciamedical.com.au
NC3441-Apr17
WINTER 17
CONTENTS Features
42
Fundraising
12
42 Technology for fundraising: how
Accessibility
technology has evolved the way we fundraise
16 Quick tips for choosing the
44 Seven things you need to do to
correct wheelchair
19 Wheelchair product review 20 Wheelchair comparison
27 One step at a time
be great at crowdfunding
46 Fundraising success stories
Regulars 4 Welcome
28 Puberty
28 Puberty – what you’re too afraid to ask!
30 How to talk to your child about puberty, sexuality and safety
34 Winter wonders – product feature
38 Alternative treatments: the ins and outs
5
Products we love
7
Cooper’s travels
8
Rare disease in profile – congenital muscular dystrophy
25
Tech-man – Stair climbing on the horizon for wheelchair users
33
Book reviews
36
Multimedia we love
47
Family profile – Roberts family
50
Special needs teacher in focus – Emily Whish-Wilson
53
Directory
54
Competition corner
55
What’s on calendar
3
4
WINTER 17
Welcome to Source Kids We celebrated Mother’s Day a few weeks ago – a celebration of all the things we do day-in and day-out to ensure our kids have the best opportunities to reach their potential. Prior to the day, we put a call out for awesome mothers to send us their favourite pic of being a ‘mother’. You’ll never guess what – only a few sent them in! It seems we mothers are happy to share beautiful pictures of our kids doing amazing things, striking model poses and pretty much just looking downright cute but, in typical motherly fashion, we put ourselves last. We don’t want to share those selfies that we look at late at night when the kids are in bed – the ones that make us feel like we are awesome and damned lucky to have these little people in our lives. We did put together a video of the few beautiful mamas who sent us their pics, along with our bloggers and SK team members in our ‘Source Kids Mums – Mother’s Day’ video – check it out on our Facebook page! Never fear, you’re not alone if you feel this way and want to tuck yourself away from the world! But we want to change the way we see ourselves as special needs mothers. You’ll see, over the coming months, the SK team putting ourselves out there to (hopefully!) encourage other amazing mamas to do the same. We hope it brings you some laughs and a bit of fun (oh, and of course inspires loads of you to start sending in your mama-action-shots!). So, onto Winter 2017. We’ve got a fabulous issue filled with great content including all things accessibility, with a comprehensive review and comparison of wheelchairs for children and young people up to the age of 25. We also cover puberty (and answer those questions you haven’t wanted to ask), alternative treatments, muscular dystrophy and we explore the new age of fundraising. I hope you enjoy the issue, and please, every mother out there pour yourself a cup of tea and give yourself one massive pat on the back for the amazing things you do every day for your children. We are all in this together and I’m so happy to share this journey with each of you.
Emma Price CEO/Founder
Source Kids CDSA PO Box 5279, Launceston TAS 7250 Phone: 03 6327 1995 ABN: 66 434 598 812 Web: www.sourcekids.com.au 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
Editorial Editor: Marie-Louise Willis Writers: Marie-Louise Willis and Rachel Williams Contributors: Emma Price, Naomi Sirianni, Cooper Smith, Natalie Roberts, Emily Whish-Wilson, Dace Johnson, Tom Dawkins, Heather Anderson, Fay Angelo, Rose Stewart, Natasha Alexander, Kitsa Yanniotis Advertising and Marketing Business Development and Marketing Manager: Naomi Sirianni For advertising enquiries please call 0447 755 043 or email advertising@sourcekids.com.au Digital Content Editor Nicole Davis For digital content enquires and submissions email nicole@sourcekids.com.au Graphic Design Imogen Brown
F L Y I N G
Publisher Emma Price Editorial and advertising in Source Kids is based on material, written and verbal, provided by contributors and advertisers. No responsibility is taken for errors or omissions, and opinions expressed do not necessarily reflect those of the publisher. All material in Source Kids is subject to copyright provisions. No part of this publication may be reproduced without written permission by the publisher. Distribution 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
Cover Photography Our Winter cover was shot in a studio in Port Melbourne by the incredible Gazi. Check out more of his work at www.gaziphoto.com
Cover Story Our cover star this issue is Austin Love from South East Melbourne. Austin has LAMA2 congenital muscular dystrophy and you can read all about him in our Rare Disease article on page eight. Austin uses a Snapdragon power wheelchair from Dragon Mobility and is wearing custom Well & Able orthopaedic footwear from Carmella’s House.
WINTER 17
5
Fidget cube Back fastening waterproof jacket Designed to be worn sitting, this jacket is a winner in our eyes! Lightweight and waterproof, the jacket opens up fully at the back allowing the wearer to be dressed from the front. Ensuring arm and body movement is never restricted this snug, dry concept ticks all the boxes for those wintery days out. It is also machine washable, has a warm fleece lining and is available from ages three through to 14+ years. Plus, they deliver Australia wide!
Click. Breathe. Roll. Glide. Flip. Spin. This cube is here to satisfy children, adolescents and adults by keeping them calm and regulated. Let’s just note that it may be highly addictive for any parent or therapist out there too! 3 x 3 x 3cm is an ideal size for holding in the palm of your hand or in a pocket. These stress relief toys could bring positive real-life effects and outcomes to its user. These are not recommended for those under three years of age. www.mydiffability.com.au
www.willowbug.co.uk
Magic waxi gel crayons What could be better than crayons recommended by occupational therapists? Perhaps crayons that work so smoothly and glide with such ease! These are the kings of the drawing board! The gel tip allows minimal effort and has a large body for easy grip. They can be dipped in water for a paint effect or why not in the bath? These crayons are non-toxic, wash out of clothing, no sharpening required and they don’t dry out if you forget the lid! Perfect for colouring, drawing and strengthening those fine motor skills! www.lunables.com One of five lunables packs see page 55 for details
Scallop seat The most exciting new seating apparatus has hit our shores and R82 are now suppliers of the revolutionary Scallop Seat. It provides stability without preventing movement and is a sensory stimulating seat that people of all ages, abilities and needs can enjoy. The Scallop can be used for floor sitting or attached to a chair and enables its user to enjoy everyday activities with ease. Not only does it look stylish, it is portable, versatile and provides postural control. Plus it comes in four different sizes and caters up to 70kg in weight. Find out more at www.also4me.com or contact R82 www.r82.com.au
SAVE THE DATE
16 -17 MAY 2018 Melbourne Showgrounds
On display will be the latest in assistive technology, aids and equipment, as well as options for mobility, communication, travel services and lifestyle options. The Independent Living Expo is an event that welcomes all those involved in ensuring better outcomes for people with disability of all ages. The Expo is of interest for everyone, whether a consumer, care giver, allied health practitioner, equipment funder or support organisation.
For more information phone 1300 789 845 or visit www.atsaindependentlivingexpo.com.au Media Partner
WINTER 17
Cooper’s travels Cooper Smith is 11 years old and a keen traveller and foodie. Cooper uses a manual wheelchair while be travels as he has dystonic quadriplegia cerebral palsy. You can see more of his adventures on Instagram @thewheelfoodie I love to travel and I’m going to share my experiences travelling internationally – from booking a flight to getting on the plane. 1. When you first book your online tickets, tick the wheelchair box so that the staff know they will have a passenger who uses a wheelchair. If you use a travel agent, they will do this. 2. If you have a wheelchair, you need to check in at the counter. That is where you get a tag for your wheelchair and your boarding pass. 3. You need to know the weight of your wheelchair. 4. After you check in you go through security. Usually a staff member will assist you and your family through security (in my family, Mum takes me and Dad takes my siblings). This is where your carry-on bags get x-rayed.
7
5. In security, staff always ask me and Mum if they can pat me down. Because I am a male a male does this. I put my arms up and sit forward in my wheelchair. They use a mirror to check underneath for anything suspicious. 6. After security you need to show your passport. Look out for a wheelchair symbol as there is almost always a special assistance queue. The official will take your passport and take a photo for their records. 7. You are now through the official stuff and ready to get on the plane. 8. We usually have to get to the gate a bit early. 9. As a wheelchair user, I get to board first as it takes me a bit longer to get into my seat and organised. Most times I get to sit close to the front. 10. Airport staff take my chair and put it in the plane underneath so it’s there at my destination. Staff will call down to the ground staff before we land. I love flying and have always had really friendly staff to support me and my family. I have been in the cockpit many times to see the pilot and love exploring new places.
8
WINTER 17
Congenital muscular dystrophy the story of two families Rare Disease
Austin Love Austin Love is literally powering past his health challenges and has a career ambition that will see him reach for the stars. Zooming around in his electric wheelchair, the Melbourne four-year-old is tackling his health challenges head-on with patience and resilience. Austin has LAMA2 congenital muscular dystrophy, a very rare form of muscular dystrophy that affects all his muscles. He needs assistance to roll over and sit up, and his muscles aren’t strong enough to lift his own arms but with the right equipment and unwavering love and support from mum, Kathleen, Austin gets the most out of life. “He needs a lot of assistance, for example, he can drive himself around in his electric wheelchair using a small joystick, and stand up in a standing frame. We have made arm supports that have counter weights, so he can lift his arms and use his hands to play,” Kathleen explains. “Due to the muscle weakness, he has problems swallowing and so is fed through a PEG feeding tube in his tummy, although he loves tasting different foods. “His breathing muscles are also affected and he uses a lot of equipment to help with his breathing – a CoughAssist machine during the day and a BiPAP machine overnight.
“Austin is very susceptible to infections, so we have to be careful about that. A normal cold can have a lot of complications.” Austin was formally diagnosed via Whole Exome Sequencing at 15 months after a blood sample was sent to the USA for testing. Kathleen reports that it took more than a year for the official diagnosis to be made – bringing her relief when it finally was. “It meant we could start to figure out how to help him. It also meant we could get in touch with other families with the same condition through Facebook support groups. We also found out about CureCMD and it was wonderful to learn about all the research and work that is happening to find treatments and cures for congenital muscular dystrophies,” she says. “We have never met another family affected by the same condition but have been able to connect with other families worldwide.” Just as Austin’s favourite Disney movie character Aladdin discovered a whole new world on his magic carpet, Austin’s chair allows him the mobility to explore and learn. “We believe that having access to powered mobility at a young age has been incredibly important for Austin’s development, learning and independence,” Kathleen says. “He is not strong enough to self-propel a manual wheelchair. Austin got his power chair when he was twoyears-old and never had any trouble driving it. The very first day he was steering himself around using the joystick. “It has lots of features that really help him enjoy every day. His standing frame fits onto his power chair base so he can drive himself around while he’s standing up. The seat can go up and down, so he can get right down on the ground and play in the dirt or sit on the mat with the children at Kinder, and also sit at the kitchen table to eat or play. “He loves riding his modified bike (pushed by mum), and exploring the world by himself in his power chair. He is a big help around the house and helps with cooking, folding clothes and washing the dishes at the kitchen sink while he’s standing in the standing frame.”
WINTER 17
9
There are lots of visits to the hospital for the animal loving little boy, whose favourite colour is red. “Sometimes it’s hard to fit in all the therapy he needs, along with all the things he loves doing. As well as Kinder, play group and swimming, he usually has at least one or two appointments a week - such as physiotherapy, speech therapy, early intervention, respiratory specialists or neurology. He is a very brave, patient and resilient kid!” Whenever Austin is at the Royal Children’s Hospital he loves visiting the Starlight Room. “When he grows up he wants to be a Captain Starlight,” Kathleen reports. We at Source Kids look forward to seeing him shine brightly into the future!
Bailey Heddes Imagine the anguish of watching your 10-year-old son plan his own funeral. It was a heartbreaking moment in the life of Tiff and Malcolm Heddes, whose son Bailey has congenital muscular dystrophy merosin deficient, which means he has never been able to sit, crawl, walk or move his limbs against gravity. The Gold Coast couple’s biggest challenge has been keeping the now-17-year-old alive. “Bailey has had over 50 admissions to hospital and been on life support numerous times,” Tiff says. “After being particularly unwell for six months when he was 10, he arranged his own funeral – even organising with our Catholic priest for our beautiful staffy to be at the service.” Bailey has since been ventilated 24/7 and his lung function is down to five per cent. “He has severe contractures, is fully PEG fed, has scoliosis, and the only movement he has left is his eyes, mouth and top part of his fingers,” Tiff says. Bailey uses those abilities to get the most out of his available independence – through his Playstation. “Bailey loves gaming and social media. In fact, he is now doing some social media work for some sports personalities on the Gold Coast and has made friends all over the world,” Tiff says. Tiff recalls suspecting that something was not right with Bailey in utero as he did not move much. Once he was born, her worst fears were realised. “He had such a weak cry and could not feed. The paediatrician suspected he had a broken collar bone from the birth process and I was
devastated to think my new little baby would be in so much pain. Little did I know that things were about to get worse”. “A CPK test revealed his levels were off the scale and it was then suspected that Bailey had some type of muscle wasting disease. We were told to have him christened as the doctors were certain he would not live as he was so weak. “At six weeks Bailey had a muscle biopsy that was sent to France to confirm the diagnosis. “As a parent, all your dreams and hopes for your child are absolutely shattered, you question yourself, you think ‘why me?’ and at times I did not want to bond with Bailey as I was so scared he would die.”
10
WINTER 17
such heavy stuff for a five-year-old to process and my heart was truly broken for both my children,” Tiff recalls. “But Bailey has inspired Sam and Sam is now at University doing Bio-Medicine and going down the research path as he wants to find cures for disease to help others.” Tiff says communication is key when it comes to parents of special needs children and that the right mind-set is paramount. “A positive attitude goes along way, as does support from family and friends. Some friends have found the journey difficult and no longer have contact, however we have made friends we never thought we would through this journey. Bailey says his everyday life is physically taxing at times due to his extreme pain. He says it was also frustrating not being able to attend mainstream high school and having to do Distance Education from home because he missed out on the social contact. Despite this, it hasn’t stopped his educational achievements – he is planning on completing further education in IT or social media.
“Life is full on with Bailey but we wouldn’t have it any other way. He is such a positive and inspiring young adult who has faced so much adversity and taken on every challenge with a smile on his face. We are so proud of him and his brother.”
“Bailey says his biggest challenge now that he is older is relying on people to care for him 24/7 and in particular doing his personal care. It is also hard for him when his friends are turning 17, getting their licences and becoming more independent, whereas Bailey is becoming more reliant on people to assist him,” Tiff says.
Congenital muscular dystrophy (CMD) refers to a group of muscular dystrophies that reveal themselves at or soon after birth.
One of the biggest challenges that stemmed from Bailey’s situation was the impact it had on his healthy older brother Sam, 19. “Life was difficult for him as I was always in hospital with Bailey. I clearly remember when Sam was five and the PICU doctors were talking to him about the fact that his brother may not live. He didn’t cry, he just asked lots of questions and I could see his mind processing this. Shortly after this Sam and I were walking down the long corridor of PICU when Sam tugged on my hand and said ‘mum what do we do when Bailey dies?’ – my gosh, this was
Congenital muscular dystrophy
There are at least 30 different types of CMD and most children with CMD exhibit some progressive muscle weakness, although they can have different symptoms, degrees of severity and rates of progression. This weakness, usually first identified as hypotonia, or lack of muscle tone, can make an infant seem ‘floppy’. Later, infants and toddlers may be slow to meet motor milestones such as rolling over, sitting up or walking, or may not meet some milestones at all. The majority of CMD types are related to proteins that make up or interact with the extracellular matrix that surrounds muscle fibres.
Need help? Variety is here for you We help when others can't Variety – the Children’s Charity helps children and their families with financial support for things like wheelchairs, specialist equipment and medical supplies, when they can’t afford it, and when government assistance isn’t available. For families of children who are sick, disadvantaged or who have special needs, finding support can be a challenge. Each year, thousands of these children and their families turn to Variety for support when they need it most. If you or someone you know is struggling to cope, Variety is here for you. Visit our website or give our friendly team a call on (03) 8698 3900.
variety.org.au
12
WINTER 17
Accessibility
Accessibility Imagine this… You’re young. You’re fun. The world is your oyster. And the only thing stopping you from the time of your life is a step. Or a flight of steps. Or a doorway that is too narrow.
That was the reality for a young adult who decided that she wasn’t going to allow being in a wheelchair to stop her from having a night out with her friends in fly-on-the-wall style documentary I watched recently. It followed her and her mates attempting to enter bars without ramps, night clubs with no lifts, disabled toilets used as storage rooms and taxis unable to transport her and her chair; and while a good deal of the bar staff they encountered tried, good naturedly, to lift her and her chair into their venues, it was undignified, embarrassing and it was clear that she wasn’t going to be able to unobtrusively have a drink with her friends and enjoy her night like everybody else. It made me wonder: why is our current version of ‘accessibility’ still so inadequate?
Accessibility. A great word. One we hear bandied about, overused and yet not quite achieved, similarly to inclusion. The Oxford English Dictionary defines accessibility as: 1) able to be reached or entered; 2) able to be easily obtained or used. Although wonderful in theory, it even has the blue symbol to prove it, the reality for the large number of Australians who use a wheelchair is that, by that definition, it’s clear that we have a bit of work to do before we are a fully accessible nation for wheelchair users. That being said, if you look, there are wonderful initiatives attempting to bridge the gap, bring about awareness and ensure that having to use a wheelchair doesn’t mean having to miss out on enjoying everyday life with your family and friends.
Playing Touched by Olivia play spaces Not all play spaces are created equal but the people behind Touched by Oliva are working to make sure that every play space in Australia considers the needs of all people. In 2006, John and Justine Perkins lost their baby daughter, Olivia, at just eight months old to a rare disease. The Perkins felt compelled to transform their tragedy into a positive for others and create a lasting legacy in their daughter’s memory. Six weeks later, the Touched by Olivia Foundation was created.
In less than 10 years, Touched by Olivia has spread its wings and opened 21 Livvi’s Places across Australia. These play spaces are underpinned by the principles of universal design and reinforce the basic right that every child needs to play. Go to www.touchedbyolivia.com.au for more information and for where to find Touched by Olivia play spaces.
During Olivia’s sickness, the Perkins family realised the blunt reality that many children, including children with disabilities, are not afforded a basic human right – the opportunity to play. They decided that the very cornerstone of Olivia’s legacy must be born out of play for all, where everyone would belong, regardless of difference. It was clear to the Perkins family that the perfect environment to fulfil their dream and be true to Olivia’s memory, was through the creation of inclusive play spaces, called Livvi’s Places.
Liberty Swings
The Touched by Olivia family works hard to ensure that government, corporate and communities collaborate to create inclusive play spaces.
If you’d like to find a Liberty Swing in your state or want further information, go to www.libertyswing.com.au
The Liberty Swing is a world-first Australian innovation – a swing that allows children in wheelchairs the opportunity to experience the joy of having a swing in the park. The Liberty Swing can only be utilised with the use of the MLAK Key. If you require a key, please see your nearest Master Locksmith.
WINTER 17
13
Disability parking permits It is worth making sure you have a disability parking permit, if you or your child is eligible for one. Permit holders can park in parking spaces showing the international symbol of access and can receive concessions in most public parking spaces where the sign or meter shows specific time limits. For further information about permits that are not part of the Australian Disability Parking Scheme, please contact the issuing agency in your area.
Each state and territory has slightly different laws governing disability parking permits, so go to the link below, which will take you to the applicable link. Search for Australian Disability Parking Scheme at www.dss.gov.au for more details.
Companion Cards Companion Cards enable eligible Australians with disability to attend sporting, cultural and many other events and activities without incurring the cost of an extra ticket for their carer. The Companion Card is for people with significant permanent disability who can demonstrate that due to the impact of the disability they are unable to attend most community activities or events without attendant care, and that need is life-long. More than 2700 businesses support the National Companion Card. Big name businesses include the AFL, Basketball Australia, Tennis Australia, the Australian
Toilets Finding a toilet that is accessible can be a challenge when you’re out and about.
Changing Places
Chamber Orchestra, Reading Cinemas, Circus OZ, Fitness First Australia, Circus Royale, Event Cinemas, Greater Union Cinemas, Birch Carrol and Coyle Cinemas, The Australian Ballet, Musica Viva and the Australian Rugby Union. You may like to contact the relevant state and territory government departments for further information – you can find their details on the map on the Companion Card website, at www.companioncard.gov.au
municipalities and National Parks and in adaptive playground equipment (Liberty Swing – see page opposite) across Australia.
Changing Places is a project to advocate for public toilets with full sized change tables and hoists in major public spaces across Australia to meet the needs of people with severe and profound disabilities.
People with a disability are able to purchase an MLAK master key, which will open all toilets, playgrounds and other facilities that are fitted with this specially designed lock.
Check out www.changingplaces.org.au to find a Changing Places toilet.
Find out more at www.masterlocksmiths.com.au
Master Locksmith Access Key (MLAK)
The National Public Toilet Map
The Master Locksmiths Access Key (MLAK) is an innovative system that enables people with disabilities to gain 24/7 access to a network of public facilities.
A project of the National Continence Program, the website helps you to plan your journey by showing you exactly where toilets are located.
The MLAK system has been fitted to elevators at railway stations, accessible toilets in Council
www.toiletmap.gov.au
14
WINTER 17
Accessibility
FreeWheel wheelchair attachment from Permobil If you are in a wheelchair and want to have more freedom, get outside and enjoy the snow, hiking trails, or easily glide down bumpy sidewalks and curbs, then the FreeWheel wheelchair attachment is the answer. This revolutionary adaptive product is durable, lightweight (just over 2kgs) and quickly clamps to the footrest of a rigid-frame wheelchair and allows you to push over surfaces that would typically be impossible. With the FreeWheel you are ready to roll in seconds. Strolling, exercising, hiking, or just checking the mailbox, is so much easier with the FreeWheel. Grass, curbs, and rough roads can be easily navigated to help you in your quest for independence. Find out more at www.seatingdynamics.com.au
Keeping your wheelchair user comfortable Temperature control seat cover The made-to-measure wheelchair seat cover with elastic corner fastenings is made with Outlast® materials, which enhances all Nikki G’s temperature control items by providing the benefit of temperature regulation through heat and moisture management. Originally developed for NASA, Outlast® technology utilises phase change materials, which absorb excess heat from your skin when you are warm, stores it and releases that heat back to you when you begin to cool down. Find out more at www.nikkigs.com.au
Temperature control clothing Finding the right clothing to make your wheelchair user comfortable is an important consideration at all times and it certainly means that getting out and about is significantly easier! Nikki G’s Temperature Control Clothing® assists children and adults with neurological conditions to balance their own body temperature.
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
NEW BACK ZIP
Built extremely stable, designed for both ambulatory and non-ambulatory children.
available in large adult sizes
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 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.
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.
use co ‘WON de for 20 SIE’ % 3 or m off or items e *
Wonsie specialises in hard-tofind larger bodysuits which fit infants through to most adults.
lower legs to help keep wandering hands out of nappies and pants deters inappropriate undressing and keeps tummies covered our Tummy Wonsies are designed to make tube feeding easier we offer worldwide shipping and free shipping within Australia *discount excludes shipping.
w: wonsie.com.au
| e: info@wonsie.com.au
WINTER 17
Unlike traditional fabrics that trap heat, products with Outlast® technology respond to each person’s unique body temperature to balance the microclimate under the covers. Outlast® technology is proactive, continuously absorbing excess body heat, storing it, then releasing it to maintain a steady, comfortable temperature. www.nikkigs.com.au
15
Keeping those backs and tummies covered All-in-one suits are a great option to guarantee no riding up in the back for wheelchair users. Wonsie produce a great range that also come with a tummy access option for our wheelchair users who are PEG fed, and poppers make for easy nappy change access, plus they are available in all sizes up to small adult. www.wonsie.com.au
Keeping warm If keeping your child warm when out and about is a concern but taking clothes on and off while they are in their chair makes the whole exercise seem really challenging, you should take a look at the gorgeous snugs, wraps, and coats from Willowbug. Easy to add or remove, they make going out on even the coldest and wettest days significantly easier, and as an added bonus – are super cute. www.willowbug.co.uk
Stylish wheelchair clothing for children and teens Nikki G’s Temperature Control Clothing produces garments to help regulate and control body temperature, assisting children who have a disability in being able to better participate in daily activities and have a better quality of life. Outlast® material used in all Nikki G’s Temperature control clothing provides proactive temperature regulation. Originally developed for NASA, Outlast® absorbs heat from skin when warm, stores it and releases the heat back when cool. We have a wide range of products available including bedding, wheelchair blankets, vests and sleepwear.
Back fastening wheelchair jackets Wheelchair snugs Wheelchair ponchos Wheelchair coveralls
www.nikkigs.com.au Facebook: Sue Gay Nikki G’s Temperature control clothing E: nikkigs@outlook.com M: 0413 006 836
SKWinter2017_NikkiGs_89x134_02.indd 1
Willow Bug takes the drama out of dressing, with clothing that fits easily over heads, legs, arms and wheelchairs in kid friendly colours and prints.
www.willowbug.co.uk Contact us at hello@willowbug.co.uk or call 07720 893 441
15/05/17 9:50 AM
16
WINTER 17
Accessibility
Quick tips for choosing the correct wheelchair
Choosing the correct wheelchair for your child can be confusing, so it is helpful to get the assistance of a physiotherapist who has the skill and experience in the process. Successful use of a wheelchair by your child depends upon correct fit of the child to the wheelchair, the features of the wheelchair and whether it will be used for home, school and other settings. Funding options are also important to discuss, as wheelchairs can be costly items. The process is divided into two broad areas – information gathering and assessment; and problem solving and prescription. The process usually involves the following steps: interview with the family and child, observation and physical assessment of the child, goal setting with the family, measurement of the child and wheelchair trial, prescription discussion, familiarisation with wheelchair and review.
Information gathering: Initially the physiotherapist will discuss with you what the goal is for the wheelchair. Is it the child’s first wheelchair or a replacement for an existing one that is outgrown or no longer suitable? If it’s a replacement wheelchair, what did or didn’t work for the child and family with the previous wheelchair? If it is to enable the child to move independently by propelling the wheelchair by themselves, it is critical the wheelchair and seating be designed to allow proper biomechanics for efficient propulsion. Consideration is given to comfort, mobility, positioning, durability of appliance, function required, functional movement available, client weight, environmental factors, transfers, transport of wheelchair, method of propulsion, and growth. Further aspects of seating assessment and prescription would depend upon specific assessment of the child. Once the family and child’s needs have been identified, the therapist matches all these factors to the specific features available in a wheelchair. The physiotherapist will then organise to meet with wheelchair suppliers so you and your child can trial different wheelchairs to work out the best fit. This can sometimes take time to get the best outcome for you and your child.
Problem solving and prescription: Wheelchair features to consider: • S tyle of frame: how the wheelchair folds and if wheels come off? This can assist with transport.
• F ootrest style: it should support the child’s feet e.g. swing away to allow for standing transfers if required. If footplates are too far forward (greater than 90 degrees), this will place a stretch on tight hamstring muscles, the pelvis will tip into a slumped sit position and the child will have a curved spine and this will affect head position. Footrest style also affects manoeuvrability of wheelchairs in small spaces. • A rm rest style: removable arm rests allow for easier access to wheels, ease of transfers, increase manoeuvrability e.g. under school desks and other surfaces. • S ize: wide wheelchairs are difficult to propel and important to consider in the selection process. • S eat depth: this needs to suit the child as a seat depth too short will be unsupportive and if too long, the child can’t position pelvis well and therefore this may reduce arm and hand function and cause the child to slump and have a curved spine. This can contribute to increased risk of falling out of the chair. • B ackrest height: low height will be more functional for a child with good upper limb function; a child with lower upper limb function will require a higher backrest height. • H eight and adjustability of push handles: this is important to assist caregivers to push the wheelchair and ensure good posture. • F loor to seat height: this is important for transfers and seating under tables. • B rakes: consider the ease of access for the user and effectiveness. • W heelchair wheels and castors size, type and position: if the position of a child’s centre of gravity is directly over rear wheel axle – this will promote more efficient propulsion and access to wheels. • S eat cushions: this is important to minimise risk of developing pressure areas. Several factors contribute to the development of pressure areas including skin temperature, moisture, shear and compressive forces. • P elvic restraint/belt: Wheelchair tips and falls often are due to poor adjustment/fit of the wheelchair and/ or poor use of wheelchair skills. Pelvic restraints or seat belts when properly adjusted can help prevent injuries due to tips and falls. Dace Johnson – Physiotherapist, Movement Solutions Physiotherapy Practice For more information contact reception@movementsolutions.com.au
Paragon Mobility was formed in 2009 as a direct response to the increased need for Specialised Assistive Technology products within Australia. Our goal to is to able to provide high quality seating and mobility products coupled with education services directed toward providing positive client outcomes. Paragon Mobility distribute products from Ride Designs, Ki Mobility, Raz Design, Therafin and Freedom Trax. Our History In 2009, Paragon Mobility grew off the success of our original company Motion Specialties. Now one of the largest independently owned suppliers of Assistive Technology in Australia, Paragon Mobility continues to grow a portfolio of world class products, and we look forward to working with our dealer network across the country to assist end users in achieving positive outcomes. Our mission
To foster long-term customer relationships delivering quality rehab mobility products with a focus on a high level of customer service.
Paragon Mobility Ph: 1300 652 382 3/10 Tapnor Crescent, Brendale, Qld. 4500 www.paragonmobility.com.au info@paragonmobility.com.au facebook.com/paragonmobility
•
•
YOUR WORLD WITHIN REACH.
FEATURING
info.au@permobil.com l 1300 845 483 l www.permobil.com.au
WINTER 17
19
Accessibility
Electric
Electric
Electric
Electric
Manual
Manual
Manual
Manual
Manual
Manual
Manual
Manual 32 Zone
Manual
31 Z ippie Iris Tilt-In-Space Wheelchair
Manual
Manual
28 TiLite Twist
Manual
30 Zippie Xcape Manual
29 Ventus
24 Rogue XP
27 Start (M6) Junior Manual
26 SMIK Wheelchairs Manual
25 Scooot
20 Little Wave Clik
23 Q2 Manual
22 Melrose Titanium JNR Manual
21 Little Wave Flip
16 Karma Sparrow
19 LEVO Kid and Junior Manual
18 Kudu Manual
17 Kidwalk
12 G2 Leisure Child
15 Hippocampe Manual
14 Helio Kidz Manual
13 Glide Cadet
8 Wizzybug
11 Ergo Lite Manual
10 Eagle Manual
9 Avantgarde Teen 2
4 Koala
7 Skippi/ Skippi+ Electric
6 QM-710 Electric
5 M300 PS Jr
3 K450
Electric
2 K300 PS JR
Electric
1 Juvo
Wheelchairs
Manual
Product review
20
WINTER 17
Accessibility - Wheelchair product review comparison chart Made by
Supplied by
Contact
Best suited for
Electric/Manual
1 Juvo
Name
Ottobock
Ottobock Australia
www.ottobock.com.au
Everyday companion
Electric
2 K300 PS JR
Permobil
Permobil Australia
www.permobil.com.au
Children, teens and young adults
Electric
3 K450
Permobil
Permobil Australia
www.permobil.com.au
Children
Electric
4 Koala
Permobil
Permobil Australia
www.permobil.com.au
Toddlers
Electric
5 M300 PS Jr
Permobil
Permobil Australia
www.permobil.com.au
Children, teens and young adults
Electric
6 QM-710
Quickie
Sunrise Medical
www.sunrisemedical.com.au
Children, teens and adults
Electric
7 Skippi/Skippi+ Ottobock
Ottobock Australia
www.ottobock.com.au
Everyday powerchair
Electric
8 Wizzybug
Wizzybug
Ability Centre
www.cptech.com.au
Front wheel drive powered vehicle
Electric
9 Avantgarde Teen 2
Ottobock
Ottobock Australia
www.ottobock.com.au
Customised everyday wheelchair
Manual
10 Eagle
Karma Wheelchairs
Fisher Lane Mobility
www.karmawheelchairs.com.au
Perfect for someone on the go
Manual
11 Ergo Lite
Karma Wheelchairs
Fisher Lane Mobility
www.karmawheelchairs.com.au
Children, teens and adults who like to travel
Manual
12 G2 Leisure Child Glide
Alphacare
www.alphacare.com.au
Children
Manual
13 Glide Cadet
Glide
Alphacare
www.alphacare.com.au
Children
Manual
14 Helio Kidz
Motion Composites
Active Rehab
www.activerehab.net.au
Custom built and light weight
Manual
15 HippocampeÂ
Hippocampe
AC Mobility
www.acmobility.com.au
All-terrain beach wheelchair
Manual
16 Karma Sparrow Karma Wheelchairs
Fisher Lane Mobility
www.karmawheelchairs.com.au
Children, teens and adults who like to travel
Manual
17 Kidwalk
Prime Engineering
Ottobock Australia
www.ottobock.com.au
Users who can achieve a reciprocal gait
Manual
18 Kudu
R82
R82
www.r82.com.au
High level support, tilt in space, self-propelling
Manual
19 LEVO Kid and Junior
Levo
AC Mobility
www.acmobility.com.au
Paediatric manual wheelchair with power standing
Manual
20 Little Wave Clik Ki Mobility
Paragon Mobility
www.paragonmobility.com.au
For young, active wheelchair users requiring a high degree of agility
Manual
21 Little Wave Flip Ki Mobility
Active Rehab & Paragon Mobility
www.activerehab.net.au www.paragonmobility.com.au
Custom made
Manual
22 Melrose Titanium JNR
Melrose Kiwi Concept Chairs
Melrose wheelchairs
www.melrosewheelchairs.com.au
All-purpose day chair – suits 3-16 years
Manual
23 Q2
Quickie
Sunrise Medical
www.sunrisemedical.com.au
Active children, teens and adults
Manual
24 Rogue XP
Ki Mobility
Paragon Mobility
www.paragonmobility.com.au
Active use for teens
Manual
25 Scooot
Firefly by Leckey
Special Needs Solutions www.specialneedssolutions.com.au Children & Active Rehab www.activerehab.net.au
Manual
26 SMIK Wheelchairs
Dejay
Dejay
www.dejay.com.au
Custom built and suitable for children, teens or adults
Manual
27 Start (M6) Junior
Ottobock
Ottobock Australia & Alphacare
www.ottobock.com.au www.alphacare.com.au
Basic everyday wheelchair
Manual
28 TiLite Twist
Permobil
Permobil Australia
www.permobil.com.au
Children
Manual
29 Ventus
Ottobock
Ottobock Australia
www.ottobock.com.au
Everyday rigid frame wheelchair suitable for active users
Manual
30 Zippie Xcape
Zippie
Sunrise Medical & Alphacare
www.sunrisemedical.com.au www.alphacare.com.au
Active children
Manual
31 Zippie Iris Tilt-In-Space Wheelchair
Zippie
Sunrise Medical, PME Group & Alphacare
www.sunrisemedical.com.au www.pmegroup.com.au www.alphacare.com.au
Children and young teens
Manual
32 Zone
Zippie
Sunrise Medical & Alphacare
www.sunrisemedical.com.au www.alphacare.com.au
Active children and teens
Manual
21
WINTER 17
Age and height
Sizes and specs
Weight of chair
Does it fold?
136-200cm+ height 160kg weight capacity
Width: 34-56cm Depth: 34-58cm
115kg
Fold down back to assist with transport height <75cm
From 5 years 75kg weight capacity
Seat width: 28-40.5cm Seat depth: 25.5-46cm
Base width: 61cm Base length: 101.5cm
109kg
No
From around 1 year
Seat width: 25.5-40.5cm Seat depth 25.5-46cm
Base width: 63.5cm Base length: 89cm
60kg
No
From 0–5 years 36 kg weight capacity
Seat width: 25.5-35.5cm Seat depth: 25.5-35.5cm
Base width: 58.5cm Base length: 81cm
94kg
No
From 5 years 75kg weight capacity
Seat width: 28-40.5cm Seat depth: 25.5-46cm
Base width: 61cm Base length: 93cm
-
No
Seat height: from 40.5cm Back height: 35.5-71cm
From 140kg
No
68kg
Can be disassembled for transport
31.3kg
-
136kg weight capacity (QM-710) Seat width: 30.5-56cm 181kg weight capacity (QM-715 HD Model) Seat depth: 30.5-56cm 110 – 150cm height 50kg weight capacity
Width: 24-38cm Depth 28-38cm
From 1-3 years
Seat width: 24.5cm Overall width: 56cm
120–160cm height 90kg weight capacity
Seat width: 26-36cm Seat depth: 30-40cm
From 10kg
Yes
From 10 years From 147cm height
From 35.5cm
14kg
Yes
From 10 years From 147cm height
From 40.5cm
8.7kg
Yes
100kg weight capacity
Seat width: 34cm Seat depth: 35cm
Seat height: 40-53cm
From 8kg
Yes
75kg weight capacity
Seat width: 34cm, 37cm Seat depth: 33cm, 35cm Overall width: 57cm
Seat height: 46cm Arm height: 13.5cm Push handle height: 90cm
15kg
Folding frame for easy storage and transportation
From 3 years
Width: 30.5-40.5cm
Depth: 30.5-48cm
Transport weight 5.3kg
Yes
All ages
Seat width: 42cm Base width: 70cm
Length: 125cm
14kg
Yes
From 10 years From 147cm height
From 33cm
11.7kg
Yes
From 1-12 years 40kg weight capacity
Base width: 60cm Base length: 67.5cm
Seat height: 28-55cm
-
No
From approx. 4-14 years
Four sizes with seat width from 16-38cm
Seat depth from 22-45cm
19-25kg (not including accessories)
Backrest folds down and wheels can be removed
120kg weight capacity
Seat width: 30-35cm Total width: 49-54cm
Total length: 69-83cm
17 to 19kg
-
75kg weight capacity
Growing from 20x20cm to 40.5x40.5cm seat width and seat depth
5.7kg
The backrest folds flat
From 18 months to 14 years
Seat width: 25-46cm Seat depth: 30-51cm
Transport weight is 9.6kg Yes (very compact) fully assembled 13-20kg depending on configuration
Customisable
Customisable
Around 8kg with wheels, Rigid framed chair with folding dependent on accessories backrest
120kg weight capacity
Seat width: 35.5-51cm Seat depth: 35.5-51cm
125kg weight capacity
Length: 65cm Max speed: 2.9kph
Front seat height: 37-51cm Rear seat height: 33-49.5cm
From 13kg
Yes
Seat width: 25.5-45.5cm Seat depth: 25.5-51cm
5.3kg
The backrest folds flat
From 6 months to 6 years
Seat width: 26cm Seat depth: 40cm
-
No, however easy to take wheels off and small, compact product
Custom built – from 75-120kg
Customisable
Varies – depending on A folding chair is available seating accessories, and whether folding, rigid or tilt
120–150cm height 90kg weight capacity
Width: 28-38cm Depth: 31-37cm
From 13.5kg
Yes
75kg weight capacity
Sized from 20x20cm up to 38x40.5cm
5.5 kg transport weight
No
120–200cm height 140kg weight capacity
Width: 28-50cm Depth: 30-50cm
From 11.0kg
No
75kg weight capacity
Seat width: 20.5-40.5cm (grows to 45.5cm) Seat depth: 20.5-45.5cm (grows to 51cm)
From 8.6kg
Yes
Custom built – from 75-135kg
Overall width: 71cm Back height: 46-61cm 10kg (depending on configuration) Lower leg length: 20-47cm Overall length: 80cm Seat depth and width: 25-46cm
Yes
75kg weight capacity
Seat width: 20-40.5cm Seat depth: 20-45.5cm
No
Front seat height: 33-48cm Rear seat height: 28-47cm Back height: 23-61cm
Front seat height: 35.5-48cm Rear seat height: 33-48cm
From 6.5kg
Motion Specialties is a market leader in Prescription Assistive Technology. Our core product is centred around world tested brands to ensure nothing but the highest quality is delivered to our customers. We can assure you that you are being provided with the best value for money solution to achieve a positive clinical outcome. Our product range covers Paediatric, Geriatric, Active, Sports, Spinal, Rehab, Power Wheelchairs and anything in between. If it is a wheelchair, a Seating Product or any other mobility requirement we are the answer. With a strong representation in Brisbane, the Gold Coast, the Sunshine Coast and extending as far north as Bundaberg, Motion Specialties has highly qualified and experienced staff to assist your every need from basic mobility devices through to extensive customised, specialised wheelchairs and seating solutions.
Motion Specialties has built a reputation on the back of support from global brands such as those listed below.
Motion Specialties Ph: 1300 652 382 3/10 Tapnor Crescent, Brendale, Qld. 4500 www.motionspec.com.au info@motionspec.com.au facebook.com/motionspec
â&#x20AC;˘
â&#x20AC;˘
HOW TO STAND OUT WHEN YOU’RE SITTING DOWN! Get mobile and make tracks by choosing PME Group to guide you through the process of selecting your new wheelchair. We provide personalised wheelchair and seating solutions that meet the needs of both the client and carer. Every wheelchair is the result of meticulous design and inspired engineering – we would never settle for less, and neither should you!
ww
w.f
ace
boo
k.co
m/
www.pmegroup.com.au
pm
e4t
hos
esp
PH: 1300 131 884 ecia
l2u
PME-Source-Kids-Ad-0417-V02.indd 1 SKWinter17_PME_210x148_01.indd
12/04/2017 3:02 PM pm 18/05/17 9:31
Lightweight & compact Meet the new Cricket by R82 A compact and easy foldable buggy • • • • •
www.R82.com.au Tel. +61 (02) 8213 6666
Available in 2 sizes Back recline Growth adaptable Light weight and easy foldable Approved for transportation
ide Crawl R S c o o ot 3 in 1 1 in 1
Subscribe to Source Kids Be the first to receive each issue of Source Kids direct to your letterbox! For just $35 for parents and families, or $55 for organisations, you’ll receive four issues of the magazine.
2 in 1
FREE
FREE
Issue 10 - Summer 16/17
2016 Issue 9 - Spring
FREE
Issue 11 - Autumn 2017
FREE
- Winter Issue 8
Firefly Scooot Gives little explorers thier own Independence
2016
Summer fun
Managing eating
A STRIDER BIKE + WISHBONE BIKE Continence WELLNESS AU PAIRS
recipes Tips, products and a Tripp Trapp chair
The
magic
AAC of
Unlockin g your chi ld’s voice
ome • employment -tHoRne • CHaRGe syndR Home safety s staR tom o’neill witH RolleR sHootinG Hoops Dancing me • Syndro • Rett 1 016_Cover_09.indd SourceKids_Spring2 Safety • Car Health Winter
5/06/16
Meet Pete r Rowe H Medica
29/08/16 9:19 PM 1:30 PM
SourceK
ids_Autu
mn2017
_Cover_
05.indd
1
l Cannab
is – the latest H Sanfilip po
syndrom
e
ver_03.in
r2016_Co
ds_Winte
SourceKi
Play • Indoor
dd 1
5/03/17
3:59 PM
Subscribing is simple, jump online at
See our other firefly products on our website, www.activerehab.net.au or ring our office and talk to our friendly staff on 1800 987 663
SKWinter17_SunriseMedical_181x134_01.indd 1
www.sourcekids.com.au and go to the ‘Subscribe’ page.
18/05/17 9:13 PM
WINTER 17
25
Stair climbing on the
horizon for wheelchair users Hang on to your hats, people! The future of the wheelchair looks bright. No longer will wheelchair users need to stare longingly at the flight of stairs that separates them from their destination, hoping that there is a lift. And that if there is a lift, it isn’t too small, impossibly far away, or even out of order. A group of students from the University of Zurich are redefining accessibility for wheelchair users with their prototype of Scewo – a stair climbing wheelchair. They have started a crowdfunding campaign (www. patreon.com/scewo) to accelerate the development and aim to bring the wheelchair to the market in 2018. The Scewo wheelchair uses two big wheels to drive around. This is done with an active control to keep the chair level at every moment. The wheels easily manoeuvre around obstacles such as curbs, tram tracks, grass, mud, stones etc. Additionally, the Scewo can turn on the spot and is very agile while driving around. Stairs are climbed up sitting
backward and driven down in the forward position. The tracks adapt to the angle of the stair automatically and keep the user level at all times. The designers of the Scewo say “The combination of the agility and comfort of two big wheels to drive around on flat ground and the robustness of tracks to overcome curbs and climb stairs is unique. We believe in redefining the life of people with a disability with design and outstanding functionality”. For more information go to www.scewo.ch
IDEAS is your personal search engine, only better.
They have real live people who answer your call and then listen to your enquiry first (without a script). Their information staff has more than 100 years lived experience of disability, and put that knowledge to help navigate solutions for your choices. Ask about anything that matters to you at all; accessible travel, transitions during school years, assistive tech of all kinds, and supports near you. The data is verified, and accurate. They try their best and don’t give up. They are free and have been around for 35 years.
You are invited to give them a Free Call on 1800 029 904 Or try FREE live web chat where you will get the same friendly team at www.ideas.org.au
Real listening, real people.
T&C's: Code must be applied at checkout to be valid. Offer ends 31st December 2017. Not to be used in conjunction with any other offer.
Onestep
WINTER 17
27
at a time
To say that Taylor Walker-Lear is putting her best foot forward is an understatement. The 11-year-old suffers from cerebral palsy diplegia, which affects her legs and balance, but it’s not putting a dent in her desire to tread the path less travelled. As we go to print, Taylor, along with her mum Toni, and dad Simon, will be walking a 10km section of the Great Wall of China – raising the profile of people living with disability. It’s a challenge not for the fainthearted – given Taylor is in constant pain with her condition, which requires her to have six-monthly Botox injections in her legs to allow her to walk with the aid of a walker or cuff crutches. “The 10km will take her about eight hours. She was going to be walking 26 kilometers over three days however we have had advice from her specialist that as she isn’t 12 months post-op, the 10kms will be like 26 for Taylor.” The operation Toni speaks of occurred in September 2016, when Taylor had a SEML operation at the Sydney Children’s Hospital, Randwick. Her hip abductors, hamstrings and Achilles were all lengthened, her feet broken to straighten them and a bone graft was taken from her hips and put on the outside of her feet to straighten them as much as possible. Despite still recovering from the surgery, she has still been training for her Chinese challenge, which she decided to do after completing the Krazy Kosci Klimb, one of the Cerebral Palsy Alliance’s major fundraisers. “Taylor was the youngest participant living with cerebral palsy and climbed to the top of Mt Kosciuszko,” Toni said. “After such a huge achievement, we knew that Taylor would want to keep achieving big things in her life. Taylor likes to set herself challenges and goals and this is just another one. She has been training really hard, five days a week, to achieve her goal. Swimming training is always part of what Taylor does but she also does walking in the water, step training, as well as walking on the sand at the beach.”
Taylor’s biggest ambition is to represent Australia at the Paralympics – something she has had her heart set on since she was four. “The moment we put her in the pool we knew that Taylor had found her happy place. We investigated Paralympic swimmers with cerebral palsy diplegia and we discovered Jacqueline Freney. Jacqueline is Taylor’s poster girl and Taylor has set goals for herself based around Jacqueline’s achievements in and out of the pool. If Jacqueline has done it Taylor wants to do one better!” Toni reports that Taylor is like any other pre-teen, just with a few extra obstacles to navigate. “Taylor attends a mainstream school near our home and participates in all areas of school life from PDHPE to science and every other subject in between,” Toni says. “The differences would be that Taylor is almost in constant pain with her legs, she fatigues easily and has to do physio every single day. It is sometimes hard for her to not be able to do what all the other 11-year-old girls can do like dancing, gymnastics and just running around.” But, what she lacks in physical strength, she more than makes up for mentally. “Simon and I are proud of our girl every single day. Taylor is our greatest teacher. Her strength and determination in all areas of her life inspires us. Just to get out of bed is difficult for Taylor but she does everything with a smile on her face and when you experience life with Taylor, even for five minutes, you know that she is going to be a world inspirer just the way she inspires us.” Toni says her little girl is wise beyond her years and will tackle the Great Wall of China with aplomb. “Taylor says: `I am in constant pain with my legs Mumma, but I just have to get up and get on with it’ - our girl is very wise,” Toni says proudly. She certainly can talk the talk, and walk the walk!
28
WINTER 17
Puberty
Puberty – what yo Puberty. It’s hard to imagine any word conjuring up more fear in the realm of parenting. Suddenly the terrible twos and toilet training seem like a breeze in comparison to the unchartered territory of the preand teen years. When we were planning the editorial for this issue of the magazine and the topic of puberty came up we, as a team, recoiled from the subject. We all have younger children, and, although the pre-teen years are fast approaching for a couple of us, we are happily living in the land of denial. Of course, this is exactly why we needed to cover it. It’s a tricky time to manage, even if your child doesn’t have a disability and with the added challenges of our
children’s special needs present, all the information we can learn now, the better prepared we’ll be and the smoother sailing it will be. Well, that’s the plan, anyway. If you are feeling stuck or worried about how to proceed, or are interested in exploring any of the medical interventions that may make this stage less challenging for your child, please make an appointment with your child’s paediatrician or your general practitioner. Heather Anderson, Fay Angelo and Rose Stewart, authors of the ‘Secret Girls’ Business’ series have a wealth of knowledge in this arena and we are thrilled to have them share some of their insights on how to manage puberty with your special needs child.
Puberty and children with a disability Is puberty different for young people with special needs? Although many young people with special needs experience delays in achieving developmental milestones, puberty usually occurs at the same age and involves the same changes as typically developing children.
Common concerns of parents and carers of children with special needs It is normal for all parents to feel anxious about this stage of their child’s development. Parents may worry about hygiene, period management, emotional meltdowns, emerging sexuality, masturbation and inappropriate touching of others. They may also have fears about the increased risk of sexual abuse and the possibility of casual sexual relationships, pregnancy and STIs. Parents may also be concerned about how their child will cope emotionally with puberty changes and their emerging sexuality, now and in the future. Parents and young people can investigate support from Family Planning Clinics, community agencies or their local GP.
Physical puberty changes These can start as young as eight and continue through the teen years.
Girls • • • • • • • • • • •
Pubic hair Growth spurt Underarm and body hair Hip and breast development Vulva, vagina and uterus grow and develop Vaginal discharge Periods Ovaries begin releasing eggs Muscle development Pimples Body odour
Boys • • • • • • • • • • •
Pubic hair Growth spurt Underarm and body hair Penis and testicles grow and develop More frequent erections Sperm production Wet dreams Shoulders broaden and muscles develop Facial hair Pimples Body odour
WINTER 17
29
you’re too afraid to ask! Emotional changes
Privacy
With puberty comes the release of extra hormones, which brings about emotional changes for both girls and boys. Emotions might change quickly. Young people might:
Let young people know that topics such as sexuality and periods are private, and conversations about them should only be held with trusted adults. Model appropriate language and respectful, discrete behaviour.
• • • •
Feel misunderstood Argue with family members, teachers or friends Want to spend time by themselves Feel angry, sad or lonely
Along with these strong emotions come new sexual feelings, making puberty confusing and distressing at times. The positive flip-side to this is that young people may also: • B ecome more assertive and be able to have more say in their daily life • Enjoy spending time with friends and their family • Develop a sense of humour • Take pleasure in new interests • Make gains in independent living skills Parents may find this time testing and challenging. They need to be conscious of their own self-care. If necessary, investigate options for support with management of challenging behaviours. They may also check out community, social and sport activities appropriate for their young person, and possible respite options.
Sex education Young people with special needs are individuals, with very different skills and learning ability. Parents will need to make judgements about what is the best way to teach their child, and what they will be able to understand. Information may need to be repeated many times before it is grasped and remembered. It is helpful for both parents to be involved in their child’s sex education and to model appropriate respectful behaviour. Teachers, the family doctor or the local family planning clinic can provide support for parents.
Sex education: the benefits • I t will help young people understand and manage puberty changes • Support development of socially acceptable sexual behaviours • Provide the language necessary to report abuse • Increase assertiveness • Reduce the risk of sexual abuse, STIs and unplanned pregnancy
When young people reach puberty, there is a need for more privacy in the home. Family members should knock before entering bathrooms or bedrooms that are occupied. Parents and carers could avert their eyes when private functions are being performed or young people require help with personal care. Teach young people to respect the privacy of other family members. Tell them which places in the home are private for them. Parent’s reactions to masturbation can have lasting effects on the self-esteem of young people. Negative reactions are not helpful. Be careful to respect their privacy.
Social media and internet use It is important for parents and carers to teach young people how to be safe online. Supervise closely and monitor use of social media. Encourage young people to tell a trusted adult if they receive messages or information that makes them feel uncomfortable. Inappropriate sexual material is readily accessible on the internet. Discuss this with young people, and closely monitor internet use on laptops, tablets and mobile phones. Avoid judgmental comments and punishment, as they can limit helpful discussions about the difference between porn and healthy relationships. Heather Anderson, Fay Angelo and Rose Stewart, ‘Secret Girls’ Business’ www.secretgb.com
30
WINTER 17
Puberty
How to talk to your child about puberty, sexuality and safety Of course, becoming a teenager isn’t just all about changing bodies and mood swings. Natasha Alexander, a clinical psychologist, explains how to discuss and manage your child’s developing sexuality and some strategies and language on how to help them remain safe. Don’t wait until your child is approaching puberty to start thinking about these issues. Start early with little occasional chats and reminders. I am fond of randomly saying things like, “Have I told you that anything covered by your undies is private? What else is private? Did you know that your mouth is private too?” or “I heard that some kids don’t know what to do if they saw something on the internet that made them feel icky. What would you do?” I comment on television programs, films, things in books. I obviously don’t do it all the time, but it is easy to just have little chats about these issues and you will feel more comfortable the more you do it, especially if you start early. Babies: use the correct terms for their genitals, just as you would name any other part of their body. When my baby daughter touches herself when her nappy is taken off, I say, “Yes, that’s your vulva”. Toddlers and preschoolers may touch themselves out of curiosity, because it feels good, or for comfort. This is natural and okay. Gently talk to them about doing it in private. “Yes, you can touch yourself. It’s your body, but it’s something you enjoy in private”. Do not push their hand away or tell them that it is dirty. Primary school age: talk about how their bodies have changed since they were a baby. Look at photos. Tell them about puberty – it’s a time of lots of changes. Use books to explain what will happen. Adolescents and teenagers: depending on their age, you may want to mention to your son or daughter that they may start to have pleasant tingly feelings in their genitals, and that they may want to touch themselves. Consider the need for some time without wearing continence pads, so that self-pleasure or self-exploration can occur. Emphasise the importance of doing this in private.
Children who are non or pre-verbal need to know as much about their body and puberty as they are able to understand. Knowledge of private and public spaces is important, as is an awareness of the difference between helpful or safe touch and unsafe touch. It is useful for everyone in the support network to know and respect their way of communicating “no” or “stop”. They need to know that they have body autonomy. Specific communication cards, gestures or symbols around sexuality and puberty can be developed. Model respect for their privacy as they grow older e.g. during personal care. Knock on their door before going in. Support them to have as much independence with personal care as they can, as they grow older. Have clear and consistent protocols around personal care that all carers adhere to. It is easier to raise concerns that specific protocols are not being adhered to, than it is to say that, “something doesn’t feel right” about a particular carer.
Keeping safe Children with special needs are more vulnerable to sexual exploitation than their peers who do not have a disability, and we need to help them stay safe. Please tell your child the correct term for their private parts: • V agina – private parts inside a female body • Vulva – what you can see on the outside of a female’s private parts • Penis • Testicles Sometimes parents are concerned that informing children of the correct names of their private parts ‘takes away their innocence’, or makes them more vulnerable. Actually, child abusers are less likely to ‘choose’ children who show knowledge about correct terms. These same children are likely to have been taught about protective behaviours, about safe and unsafe touch, and about the importance of always telling someone if they are touched inappropriately. It is important to teach children no-one should tell them to look at or touch other people’s private parts. No-one should look at or touch their private parts. Helpful touches are different, for example help with personal care, but there are clear rules about this type of touch. Have clear protocols.
31
WINTER 17
Let your child choose how they greet people, e.g. a cuddle, kiss, hug, handshake or high-five. Don’t get stressed about these conversations. Let your child know that you can handle these topics. You might get embarrassed. You might not know the answers, but you are okay with talking about this stuff. Good luck! Dr Natasha Alexander is a registered clinical psychologist from the UK, who is now settled in Brisbane and is the founder and director of Consentability, that provides assessment, consultancy, education, therapy and training for individuals and couples with disabilities and their support network. She works primarily with teenagers and adults. www.consentability.com Facebook @consentability natasha@consentability.com
Resources: SoSAFE! uses a standardised framework of symbols, visual teaching tools and concepts to teach strategies for moving into intimate relationships in a safe and measured manner, and provides visual communication tools for reporting physical or sexual abuse. It provides teachers, trainers and counsellors with skills and simple visual tools to enhance the social, social-sexual and social safety training of people with moderate to severe intellectual disability. Go to www.sosafeprogram.com for more information. www.e2epublishing.info has free posters to download such as ‘My Body Safety Rules’ and ‘My Early Warning Signs’.
Secret Girls’ Business
TM
Publisher of children’s puberty and health education resources
Sexuality and relationships consultancy for teenagers & adults with intellectual disabilities
These books have been written for girls and boys with special needs. They help young people adjust to the changes experienced at puberty, and provide a valuable resource for parents, teachers and carers.
www.consentability.com
E secretgb@hotmail.com W www.secretgb.com
SKWinter2017_Consentability_89x65_01.indd 1
Brisbane’s only exclusively child focused Podiatry Clinic and Shoe Shop
18/05/17 SKWinter2017_SGB_89x65_02.indd 9:17 PM • 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)
1
Designer Chewable Jewellery
15/05/17 9:56 AM
Distributing Australia wide For Fashion, Stress Reduction & Sensory Stimulation Stylish unisex designs for 3yrs+ Self-regulate, Concentrate & Participate Necklaces, Pendants, Bangles, Hand-Held & Pencil Toppers
Customers can shop by level of chewing
w w w. Ni nj a B a b i e s . c o m . a u
ADVERTISEMENT Modibodi leakproof underwear is your daughter's new best friend, a range that will give her confidence, comfort and security. Modibodi replaces disposable hygiene and offers superior protection for those unmentionables that can be hard to manage- light bladder leaks, menstruation, odour and discharge. Designed for comfort and ease of use, Modibodi is perfect for everyday activities such as dance, school, sports and sleep. Available in light to heavy absorbencies. Customer Reviews from Parents: “I bought these for my 12 year old daughter so that I can relax in the knowledge that if her period comes whilst she’s at school she’ll be protected and will have nothing to worry about. She loves how they fit and feel. I am really happy with these fantastic undies! I plan to buy lots more!” - Elisa “Oh my goodness these undies are an absolute god send, thank you! My 14 year old daughter with special needs really struggles with pads and they often become misaligned and we usually have a number of mishaps with leakage during her period. She wore these to school and the teachers couldn’t believe they didn’t have to help with the usual pad changes. We will be recommending them to other parents at the school and I will be buying the moderate absorption ones as well.” - Annette At Modibodi we understand that to find the right product for your daughter can be challenging online, that’s why we offer a 30 day risk free trial for all new customers.
Purchase Modibodi risk free at modibodi.com.au
RAE ANDERSON, PARALYMPIAN AND MODIBODI AMBASSADOR
Modern underwear for every bodi
Where comfort meets the ultimate in patented Modifier Technology protection to ensure your daughter gets the most out of her day and nothing is in her way!!
• Ideal substitute to disposable hygiene • Perfect for everyday activities, School, Sports and Sleep • Light, Moderate and Heavy absorbencies • Look and fit like regular underwear, machine washable • 30 day risk free trial
Shop at www.modibodi.com.au
WINTER 17
Book reviews The Special Girls’ and Special Boys’ Business Series By Heather Anderson, Fay Angelo and Rose Stewart Ideal for children with special needs, including: intellectual disability, physical disability, communication disorder and autism, these books will help young people understand and adjust to the changes experienced at puberty. Written by three experts in the field: Heather Anderson is a health nurse for sexual and reproductive health and a sexuality educator; Fay Angelo is an assistant principal, pupil welfare coordinator and teacher; and Rose Stewart is a teacher and psychologist, the books are a valuable resource for parents, teachers and carers.
Special Boys’ Business Supports boys, their parents and carers through the changes experienced at puberty. Information is presented simply, with clear pictures and limited text.
A copy of this book. Enter at www.sourcekids.com.au/win
Special Girls’ Business Takes a girl and her carer stepby-step through the process of managing periods. Information is presented simply, with clear pictures and limited text.
A copy of this book. Enter at www.sourcekids.com.au/win
The Ellie and Tom Series By Kate E. Reynolds These accessible and positive resources help parents and carers teach girls (in the Ellie series) and boys (in the Tom series) with autism or other special needs about puberty and sexuality. Fully illustrated, positive and entertaining, these books provide an excellent platform to initiate discussions with your child.
What’s happening to Ellie? A book about puberty for girls and young women with autism and related conditions. A copy of this book. Enter at www.sourcekids.com.au/win
Things Ellie likes: A book about sexuality and masturbation for girls and young women with autism and related conditions. A copy of this book. Enter at www.sourcekids.com.au/win
What’s happening to Tom? A book about puberty for boys and young men with autism and related conditions. A copy of this book. Enter at www.sourcekids.com.au/win
Puberty and Special Girls Provides practical information about growing up and will help girls understand the changes they will experience at puberty. It is easy to understand, includes excellent illustrations and offers age appropriate information in a friendly and inclusive manner.
A copy of this book. Enter at www.sourcekids.com.au/win
33
Things Tom likes: A book about sexuality and masturbation for boys and young men with autism and related conditions. A copy of this book. Enter at www.sourcekids.com.au/win
34
WINTER 17
Winter wonders 2. 1.
3.
5.
4.
6.
7.
1. Pyjama time Personalised winter pyjama sets with many designs to choose from – made with cotton elastane, $29.95, www.stuckonyou.com.au 2. Chick rocker Children stuck indoors will love rocking around on this chick, all whilst working that vestibular system – parenting win!, $199.00, www.hartsport.com.au 3. Huggable heat pack Great for kids (and adults) to keep warm and have a cuddle at the same time, $34.95, www.limetreekids.com.au 4. Ultrasonic vaporiser Aroma bloom will instantly purify, cleanse and refresh the atmosphere and create more negative ions to improve general wellbeing, from $64.95, www.limetreekids.com.au 5. Somna weighted comforter What’s better than keeping warm in winter? How about keeping warm and weighted!, from $157.50, www.sensorycalm.com.au 6. 3D memo Colourful, shaped beads hidden under cups - who is going to find a pair first?, $54.95, www.windmill.com.au 7. Instant snow Fluffly, white and artificial! Magic polymer power to heighten the senses, $6.35, www.sweetelephants.com.au
35
WINTER 17
8.
9.
8. Kidorable 3D umbrella Brighten up that rainy day with an imaginative 3D designed children’s umbrella, $24.95, www.umbrellas.com.au 9. Slumbersac Sleeping bags catering from birth up to 10 years of age. Houdinis out there will stay nice and warm throughout the night, from $30.00, www.slumbersac.com.au
10.
10. Crayon rocks Designed to teach the correct pencil grip whilst having loads of indoor, drawing fun!, $8.95, www.crayonrocks.com.au
11.
11. Earmuffs Used to protect hearing and from the cold weather, they help to settle your child when they’re disturbed, $26.99, www.earmuffsforkids.com.au 12. Kids’ bean bag Your child will want to sit on this cute animal at every occasion, from $119.00, www.kloudsac.com.au
12.
36
WINTER 17
Multimedia
We
love
Check out online…
On Facebook…
NDIS grassroots discussion group Flexiplay www.flexiplay.com.au Australia’s very own online toy rental service. A wide selection of educational toys is conveniently delivered straight to your door. We all know how exciting it is to receive a package; imagine your child receiving a new toy to play with? Flexiplay offers such a unique service where children can ‘play for as long as they like’ before returning. A new wave of sharing has certainly hit homes across the country.
On Instagram…
@icaniwillaustralia All for one and one for all. We adore this organisation and what they stand for – the eradication of bullying against children and those with special needs. They provide many services such as the grant-a-wish program, fun events and school programs. They pride themselves on being cool by educating the nation but their main purpose and goal is to empower children to eradicate conflict themselves.
If you haven’t already, go ahead and ‘like’ this Facebook page. This group offers people with disabilities, family members, supporters and professionals a public forum to discuss the National Disability Insurance Scheme (NDIS). Those who prompted for a group like this wanted to be clear on ‘choice, control and support’ for members that don’t often have that in their lives. This is a closed group so you’ll need to join!
Download the app… Children with ASD and Disability app by Raising Children Network This free app will guide and help you through funding, services and support networks. You will be able to connect with services in your local area, learn from other families’ experiences and navigate through up-to-date evidence based articles. This app is available for iOS and android.
Creating a lifetime of opportunities for children with autism AEIOU Foundation provides autism-specific early intervention to children aged 2 - 6 years. Our evidence-based program develops essential life skills, while providing family and transition support. To find your nearest centre, visit www.aeiou.org.au or call 1300 273 435.
ORGANIC & ECO FRIENDLY FAMILY LIFESTYLE STORE 20% OFF
USE CODE SOURCEKIDS AT CHECKOUT
Specialising in
Childrenâ&#x20AC;&#x2122;s Health & Food Based Solutions Eco Home & Eco Beauty Digestive Health Cultured & Traditional Foods Allergy Friendly & Gluten Free Chemical & Additive Free GAPS, Body Ecology & Paleo In-store Nutritionist & Makeup Artist 236 West St Crows Nest NSW 2065
www.emporioorganico.com.au Source Kids Ad - April v1.indd 1 SKWinter17_EmporioOrganico_210x148_01.indd 1
KetoCal is PBS listed
25/04/2017 3:33 PM PM 18/05/17 6:48
Managing EpilEpsy through diEt Research shows that more than 50% of children on the ketogenic diet will have 50% or more improvement in seizures at 3 months.* The ketogenic diet can be used to control seizures in patients who do not respond to anti-epileptic medications. Ask your Healthcare Professional or visit www.myketocal.com.au to learn more about the ketogenic diet and how KetoCal can help make the ketogenic diet easier.
NC3453-Apr17
Always consult with a specialist Dietitian before commencing a ketogenic diet. KetoCal is a food for special medical purposes for the dietary management of drug resistant epilepsy and other conditions requiring the ketogenic diet. Nutricia Australia Pty Ltd. Talavera Corporate Centre, Level 4, Building D, 12-24 Talavera Road, Macquarie Park, NSW 2113 * Martin K. et al., Ketogenic diet and other dietary treatments for epilepsy. Cochrane Database of Systematic Reviews 2016, Issue 2.
38
WINTER 17
Alternative treatments:
the ins and outs So many of our children are on a myriad of medications, but, if these don’t really seem to be working as well as you’d hoped, there is plenty of evidence to suggest that using diet, supplements and oils alongside pharmaceuticals can be beneficial. We have looked at some of the more popular evidence-based alternatives and additions to first-line medical treatments. Please remember that it is very important to discuss any changes you are considering with your primary medical practitioner before trialing them with your child.
The ketogenic diet Approximately 250,000 people in Australia have a diagnosis of epilepsy. Whilst epilepsy can be successfully treated with anti-epileptic drugs (AEDs) in the majority of cases, approximately 30% of patients fail to respond to at least two AEDs and will develop drug-resistant (refractory) epilepsy. Patients with refractory epilepsy can potentially benefit from a ketogenic diet. The ketogenic diet is a high-fat, low-carbohydrate, adequate-protein, medical dietary therapy that is a precise and carefully calculated medical diet. It requires monitoring under the supervision of an experienced ketogenic diet team, usually consisting of a neurologist, dietitian and nurse. The classic ketogenic diet provides fat, protein and carbohydrate in a calculated 4:1 ketogenic ratio, which means that for every 4 grams of fat, there is 1 gram of carbohydrate and protein combined. In some patients, such as infants and young children, a lower ketogenic ratio may be required, in which case a 3:1 ratio is commonly used. There are several variations of the classic ketogenic diet that have been developed to provide different options for the dietary management of epilepsy. These include the medium chain triglyceride ketogenic diet, low glycaemic index treatment (LGIT) and the modified Atkins diet. Effectiveness of the ketogenic diet in the dietary management of paediatric refractory epilepsy has been demonstrated in several randomised controlled studies, systematic reviews and meta-analyses. The findings have been very consistent, with approximately 50-60% of responsive patients having a >50% reduction in seizures,
30% having a >90% seizure reduction and 10% becoming seizure free (Kossoff and Wang, 2013). You need to be prepared to commit to trying the ketogenic diet for a minimum of three months to give it a chance to start to work, before deciding whether to continue with the dietary therapy longer term. The average length of time a patient remains on the ketogenic diet is two years, and the effectiveness of the ketogenic diet seems to remain with time even after stopping the diet.
Gut health, GAPS and fermentation Kitsa Yanniotis from Emporia Organic www.emporioorganico.com.au, is a certified GAPS practitioner amongst other things, and she spoke to us about managing gut health and why that is so important for our overall health.
Explain the importance of gut health and why it is so important to overall health Hippocrates’ famous quote of ‘all disease begins in the gut’ is now more widely accepted, as science has shown us the importance of gastrointestinal health as the root cause of many other health problems in the body. The gut is now referred to as the second brain due to the fact that it shares very similar neurotransmitters to the brain. It’s important that we nurture the good bacteria in our gut as that will help crowd out the harmful bacteria, which cause an imbalance and can result in dysbiosis. This is when the smooth lining of the GI tract becomes permeable and by allowing food proteins to enter the bloodstream it activates the immune system, which then causes inflammation. This can then lead to food sensitivities, malabsorption (imperfect absorption) of vitamins and minerals, an inability to eliminate toxins, dysregulation of hormones and more obvious symptoms such as abdominal pain and bloating after meals as well as reflux. Apart from being responsible for our digestive and immune systems, the beneficial bacteria in our gut or lack thereof can also
WINTER 17
influence our mental state with anxiety and depression or create foggy thinking or memory problems. The good news is that our microbiome or inner ecosystem is now the target of much more research in the field.
What is the GAPS diet all about? In its simplest form it’s about removing all those foods from our diet that are difficult to digest and damaging to our good gut flora and replacing with nutrient dense and nourishing foods that will help to heal and seal the gut. It was created by Dr Natasha Campbell-McBride who adapted the Specific Carbohydrate Diet developed by Dr Sidney Valentine Haas in the 1920s. Dr McBride recommends that we try to buy foods in the form that nature made them and as fresh as possible. The GAPS diet recommends removing all processed foods, grains, starchy carbs and potatoes, processed sugar, conventional meat and dairy, artificial chemicals and preservatives from the diet.
Who is it suitable for/good for? The diet is most commonly used with those suffering from various intestinal and neurological conditions due to an out of balance bacterial ecosystem. This includes autism, ADHD, dyspraxia, dyslexia, leaky gut syndrome, food sensitivities and allergies, fussy eaters, constipation, diarrhea, eczema, joint pain, inflammatory bowel disease, anxiety, depression, schizophrenia and autoimmune diseases.
What are the benefits? Improved digestion, boosting immunity, reducing or eliminating food sensitivities, improving neurological function, reducing symptoms of autism, better sleep, reducing anxiety and depression, balancing gut flora to stop toxic overload from bad bacterial strains from entering the bloodstream and supporting better detoxification. These changes can translate into very positive lifestyle benefits for families when their children feel better and as a consequence eat better, sleep better, behave better and do better at school and in the case of autism become more interactive and a contributing member of the family. This all comes from including the GAPS Diet staple foods, which nourish and heal such as bone broth, organic pastured meats and dairy (if tolerated), wild caught fish, egg yolks, fruit, avocados and other healthy fats like coconut oil, ghee, beef tallow, lard and olive oil and probiotic rich foods, which include sauerkraut, homemade yoghurt and kefir.
39
What are the negatives? The GAPS Diet is not a quick fix as it can take a couple of years or more to heal the gut sufficiently to be able to introduce other foods back in. It’s also a lesson in delayed gratification and involves lots of cooking from scratch and planning, so it’s definitely a huge commitment but one that pays benefits for the whole family. However, most people usually come to GAPS as a last resort having tried numerous other things so are usually dedicated to seeing things through especially as they start to see improvements in their own or their child’s health.
What is fermented food/culturing all about? What are the benefits? Why should we try it? Is it safe? Fermented foods are eaten all over the world as part of traditional diets and are powerhouses of probiotic nutrition. When we ferment or culture a food the nutritional benefit is increased one hundred fold and we make it more bioavailable to the body. The bacteria predigest the food for us and break it down so we can assimilate it more easily. The most common example of a fermented food is yoghurt where a starter culture is added to milk. The good bacteria get to work and replicate, and eat the sugars (lactose), which turns the milk sour. This is why fermented foods always taste tangy as the bacteria use the sugars naturally found in the foods being cultured as food for themselves. The culturing process significantly increases the levels of enzymes, organic acids, B complex vitamins, Vitamin C and Vitamin K. Adding a small amount of sauerkraut for example with each meal helps you to better digest and absorb the nutrients in your food. Fermented foods also strengthen the immune system and help eliminate toxins, reduce bloating and constipation and can control cravings, especially for sweet foods. The addition of foods and drinks rich in friendly lactobacilli bacteria and lactic acids can prevent or eliminate the growth of unfriendly bacteria or yeasts in the gut. As 80% of our immune system is housed in the gut it makes sense that an excess of pathogenic bacteria is now linked to many chronic diseases.
Supplements I don’t know about you, but when I stand looking at the supplements towering over me in the store, I feel completely overwhelmed by choice. Research Nutrition recommends the following three for mood and behaviour regulation:
Omega-3 Omega-3 benefits mental health and cognitive function in all stages of life – but in particular children, as their brains are at a crucial stage of development.
40
WINTER 17
Research indicates that omega-3 supports brain function, mood, memory, and promotes the health of brain and nerve cells. It has also been shown to support normal attention and cognition in children with learning difficulties, and has even shown long-term improvements in child behaviour problems. However, the body cannot produce omega-3 on its own as it can only be obtained through diet and supplementation. As such many Australians are deficient in this vital nutrient. To maintain optimum health and prevent deficiency, a minimum of 300-500mg omega-3 per day is recommended. This equates to approximately two to three serves of oily fish per week, or a high-quality fish oil supplement daily. Naturopath and Nordic Naturals representative Alex Hills advises to do your research before running out to buy fish oil, due to the wide range of quality among supplements. “Make sure it is purified to remove environmental toxins, and do a taste-test to check the freshness level - if the oil tastes fishy and rancid, forget it!”
Vitamin D Vitamin D is widely recognised for its many health benefits. Of particular interest, vitamin D may directly impact social behaviours associated with Autism Spectrum Disorder by increasing serotonin levels in the brain. The good news is that even modest amounts of vitamin D can prevent deficiency, such as getting as little as 10 minutes of unfiltered sunshine every day. Diet can also help – with foods such as salmon, egg yolk, and beef liver all containing high levels of vitamin D. Supplementing the diet with Cod Liver Oil can also help due to its naturally occurring vitamin D.
Food sensitivities The gut is intricately connected with the immune system, nervous system, and behaviour. Symptoms such as stomach pain, constipation, diarrhoea, gas/bloating, or fatigue, may be an indicator of food sensitivities. Children with ASDs, in particular, tend to be sensitive to lactose and casein (found in dairy products), and/or gluten. Using a rotational diet (under the guidance of a healthcare practitioner) can be helpful in pin-pointing any food sensitivities your child may have.
While it is best to avoid eating foods you may be sensitive to, in the case of accidental ingestion, adequate levels of enzymes can also assist the body to break down certain foods. Enzymes can be found mostly in raw vegetables and fruit, or taken as a supplement. If you do choose to take a supplement, it’s always best to go for higher-grade quality capsules that contain no fillers, which is particularly important for sensitive individuals.
Medicinal Cannabis Controversial and topical: medicinal cannabis is never far from the headlines. While there is plenty of evidence (both anecdotal and research-based) that it can be helpful in the management and treatment of a number of illness including epilepsy, it is still tightly held and controlled within Australia. Each state has different laws pertaining to the prescription and dispensing of medicinal cannabis, so if it is something you are interested in looking into for your child, it is worth speaking to your GP. As the laws begin to change to allow access, it is certain it will be tightly controlled, available on a prescription basis, and patients should be able to access it from a dispensary (like their pharmacy). As recently as the end of April, Medifarm (a Queensland company) was granted a license to begin growing marijuana for medicinal use in Australia. Watch this space.
EVERY
BODY
NEEDS OMEGA-3s ■
Third-Party Tested
■
100% Wild Arctic Cod
■
Great Strawberry Taste
Based on SPINS Scan Data
Visit researchnutrition.com.au enter promo code: SOURCEKIDS
to receive 20% off & free shipping
42
WINTER 17
Fundraising Technology
Technology for fundraising: how technology has evolved the way we fundraise While the ‘future’ doesn’t look exactly as predicted in the Back to the Future movies, one thing is for certain: the world has changed dramatically since the 1980s. While flying cars may not be the common mode of transport, technology has transformed the way we operate, with online and social media creating a world so much smaller and accessible. This allows us to share a message almost instantly, and with a potentially massive audience. Fundraising isn’t just a lemonade stall at the bottom of the driveway anymore. Whether you are looking to raise funds and awareness for a not-for-profit, a charity or for equipment your child requires, technological advances have revolutionised how we fundraise. The challenge now is learning how to embrace these changes and utilise them to our best advantage.
The social media aspect The ability to promote your cause to a potentially global audience through social media, means that your fundraising initiative can be so much bigger and more profitable than ever before. In 2015, a little girl in Toronto, Canada, garnered worldwide attention (and has raised over $90,000 to date) when footage of the lemonade stand she decided to run to raise funds to cure her brother’s Angelman syndrome went viral. Mandy Weidmann, aka the ‘Fundraising Whisperer’ and author of The Practical Fundraising Handbook says “Technology has definitely changed the face of fundraising. It just brings the world closer. From personal experience, a small school fundraiser I have been involved in that would have raised $11,000-14,000 in the past, is now raising over $20,000 just by adding an online component. Now Grandma in Scotland can take out her credit card and contribute as well.” Leanne Walsh, from Sunshine Butterflies says: “Social media has opened up numerous platforms for online fundraising initiatives as well as avenues to market and
share fundraising events. Running events can be both costly and time consuming and I also think donors are steering away from making direct donations to charities without knowing exactly where it will assist. Donors want to see transparency and expect this, and large corporates who donate want mutually beneficial partnerships.”
Online auction and bidding systems Of course, we aren’t using technology just to raise awareness of our fundraising efforts. Advances have also meant that certain aspects of the traditional events have become that much easier and more efficient. Big ticket events such as gala balls and golf days traditionally auction items as a major aspect of their fundraising initiative. Now that process is made so much easier with companies offering electronic auction options, where bids are placed from the palm of the guest’s hand, on their mobile phones – to make bidding much more interactive and fast paced. This works by giving guests a link to their own personal bidding page, which allows them to view items, place bids and make donations. Bids take seconds to place and if someone bids on the same item, guests receive instant outbid alerts direct to their phones. There is also a microsite for pre-bidding that allows those who can’t attend the event still to bid. You don’t even need to host a big event to hold an auction anymore. Companies now provide an online platform to run your auction, meaning that you can fundraise 365 days a year without the need to incur the expense or effort of hosting a large event.
Online fundraising campaigns Creating awareness and marketing your cause/product/ need through an online platform can be massively successful. Charitable organisation, Sunshine Butterflies runs fundraising pages from its website for its members.
WINTER 17
We asked founder, Leanne Walsh, why she thinks online fundraising campaigns work? Leanne said, “The set-up is easy to raise funds quickly by sharing the page with friends, family and colleagues and asking them to share with their social networks to expand the reach to potential donors. “Personal fundraising pages allow donors to read a personal story and know exactly what they are donating towards. Fundraising events shared and marketed via Facebook allow easy marketing and have a far bigger reach without costly media advertising costs.” See Page 46 for our case studies about two families who have successfully fundraised for their children through the Sunshine Butterflies fundraising pages.
A copy of this book. Enter at www.sourcekids.com.au/win
43
The legal side of fundraising It is important to remember that there are laws governing fundraising in Australia and that they differ from state to state. Before embarking on any fundraising campaign, it’s a good idea to check exactly what they are. For more information go to www.nfplaw.org.au/fundraising
The Practical Fundraising Handbook Mandy Weidmann, aka the ‘Fundraising Whisperer’ has written The Practical Fundraising Handbook, which is filled with useful ideas and tips. You can download the first three chapters for free, and purchase the book from her website www.fundraisingdirectory.com.au You can also go to Mandy’s Facebook page www.facebook.com/fundraisingwhisperer for tips and plenty of advice and support.
44
WINTER 17
Fundraising Technology
Seven things you need to do to be great at crowdfunding While sites like everydayhero, gofundme and crowdfunding are all known for their wonderful fundraising success stories, there are so many people trying to raise money for every number of causes and wonderful ideas, it is hard to see exactly how to stand out from the crowd. Tom Dawkins from startsomegood.com explains exactly how to be successful if you decide to run a crowdfunding campaign.
Crowdfunding has exploded in popularity over the past few years. Today, literally tens of billions of dollars is being ‘crowdfunded’ for everything from business start-up costs to activist campaigns to personal medical expenses. Despite the high profile of this fundraising approach, it remains very poorly understood and to many people’s surprise the actual success rate of crowdfunding campaigns is fairly poor overall, with very few platforms having more than a 1/3 success rate and many being as low as 13%.
reach them, what kind of messages they will respond to and the best way to communicate these messages to them. Consider things like email, PR releases, letter drops, offline events, telephone and direct mail etc. Successful crowdfunding takes hustle! It is not a case of simply posting your project and waiting for supporters to find you – it’s that approach that leads to so many people failing. You need to be prepared to work every single day of your campaign to get the word out there. And don’t just limit this promotion to after the campaign has launched. Some of the most effective promotional plans involve generating excitement in the lead up to your campaign launch so that supporters are ready to get behind you from day one!
3. Win their trust Being good at crowdfunding isn’t rocket science, however. You simply need to know how to focus your efforts and understand what’s really going on in crowdfunding.
One of the main reasons people won’t support you is they will perceive it as being too risky. It’s your ability to be credible and trustworthy that will overcome this.
Here are seven things you’ll need to do to be great at crowdfunding
There are three main types of risk that hold supporters back:
1. Be clear on your story The best crowdfunding projects inspire trust in potential supporters by having clear, specific and tangible goals. Before you build your campaign, be sure about what you want to achieve and think about how this can be best communicated both on your campaign page and in your outreach. And be clear on who needs to hear this story – which communities are going to resonate with your story and mission.
2. Focus on outreach Contrary to popular belief, there is no anonymous ‘crowd’ out there waiting to fund your crowdfunding project. What does this mean? You have to get out there and actually promote your campaign to the tribes who connect with your project’s goals. Coming up with a promotion plan involves identifying who these people are, how you will
1. Idea risk – can this idea work? 2. Implementation risk – can this person do it? 3. Fundraising risk – will they even raise enough money to try? The third type of risk comes up particularly for campaigns that choose a ‘keep what you raise’ model, which is why those platforms tend to have very low success rates, usually in the teens. You get to keep what you raise, but the model actually makes it harder to raise in the first place. But even without this holding people back, you’ll need to really make them believe that you and your idea are ready for prime time. The way to do this is to demonstrate the progress you’ve made so far (for instance if it’s an app, you should have designs ready to show off) and your appropriateness for this job (your previous projects or employment, educational qualifications, awards, etc.). One great way to win greater credibility is to have partners backing your campaign – that way their credibility can rub off on you and your idea.
WINTER 17
4. Have a video Apart from meeting someone face-to-face, a campaign video is one of the most effective ways to make a connection with potential supporters. In fact, campaigns with videos raise double the funds of those without! So don’t hide behind your idea or your initiative – you need to step out in front and introduce yourself to us, and video is the best way to do that. Remember that authenticity counts more than production value! Make sure your video shows your passion for the project you are crowdfunding for and why you are the right person to implement it. Here are a few more tips for making your video: • • • •
Videos shouldn’t be more than three minutes long Make sure YOU appear in your video Offer a clear call to action Always include your project short URL in your video (in the description, as a slide or as a link where possible), so that if it’s shared, viewers are able to get to your campaign
5. Offer rewards Rewards will play a crucial role in your crowdfunding campaign. Good rewards do (at least) one of the following: • Provide a valuable good or service • Allow supporters to form a stronger connection with your project • Show gratitude to your supporters through acknowledgment of their pledge Everyone has the ability to offer rewards because you can factor this into your fundraising goal and put some effort into being creative about what you offer your supporters. Let’s say you need a minimum of $10,000 to make your project happen. Think about budgeting $1,000 for rewards and offering something your community would value. Set your goal at $12,000 to accommodate this (and postage, fees, etc.) while still leaving you with $10,000 to put towards the project. At the end of the day you’re more likely to raise $12,000 with rewards than $10,000 with no rewards.
45
If the rewards are well-designed and on-mission (nice t-shirts, water bottles, reusable coffee cups, invitations to an event, a book, etc.) they can help promote your cause as well as your campaign, so it’s a win-win. But if tangible rewards just don’t feel right for your project, that’s fine! You can express your ‘rewards’ in terms of the social outcome created, which is the real reward for most people anyway. So, for example, you might say that the reward for $50 is “one young person able to join our program” and $100 as “two young people able to join our program” and so on. A mix of both approaches is most effective though.
6. Don’t crowdfund for too long Crowdfunding campaigns occur over a specific time period. Many people think that a longer campaign leads to more money raised, however this is not the case. In fact, the most successful crowdfunding campaigns are usually between 30 to 40 days. Longer campaigns can be extremely repetitive for potential supporters, dilute your message and also kill the excitement generated by your campaign.
7. Remember to follow up So, you’ve hit your fundraising goal. Now what? Firstly, thank your supporters! Get your rewards out to them quickly, or keep them updated on an estimated time of arrival. Think of every person who pledged to your project as a founder of your project and keep them updated and engaged. If treasured, they will continue to offer you support in terms of promotion, connections, time, financial resources and education. At its heart, crowdfunding isn’t just about raising money, it’s about building a community around you and your idea, and it’s that community that will ultimately carry you forward, long after the funds have been spent. Tom Dawkins is the co-founder and CEO of StartSomeGood.com, a crowdfunding platform that specialises in helping social good projects raise the funds they need to make a difference, and has the highest project success rate in cause crowdfunding. Find out more at www.startsomegood.com or follow Tom on Twitter at www.twitter.com/tomjd.
46
WINTER 17
Fundraising Technology
Fundraising s u cc e ss sto r i e s
John and Natasha live on the Sunshine Coast in Queensland with their daughter, Gabriella (who has Aicardi syndrome and autism) and son, Solomon. They wanted to buy an assistance dog for Gabriella and they turned to Sunshine Butterflies to create an online fundraising profile, while also utilising more traditional forms of fundraising. The online profile brought attention from the media and Gabriella’s story made it into the newspaper. Natasha says “We paid off the cost of Derrick (the assistance dog) in instalments, so as we fundraised we paid him off, whilst training with him. It was a big year of fundraising and dog training.” Natasha was thrilled with the results of the online fundraising campaign, “Many people choose to pay by credit/debit card nowadays and having an online profile made it easier for them. When the newspaper or TV ran a story, people could donate instantly rather than the next day with the risk of Gabriella’s story becoming forgotten due to busy lives. We also sent letters to companies like Maroochy RSL, who were happy to help but preferred to transfer the money to a legitimate charity rather than an individual’s account or a crowdfunding website.” It took about a year to raise the funds for Derrick the assistance dog and the family couldn’t be happier. “We now have a wonderful dog to help make Gabriella happy and to offer her assistance. “It is a very humbling experience to receive such generosity from the community,” Natasha Says.
Nathan and Tammy live in Queensland with their son, Cruz who has 2q37 Deletion syndrome and Duplication on Chromosome 12 (there is no name for his syndrome). Because both Nathan and Tammy are New Zealand citizens and Cruz is a New Zealand citizen by decent they are unable to access funding or services from Disability Services QLD, or the upcoming NDIS until Cruz is eligible to become an Australian Citizen at the age of ten. They decided to fundraise to assist with the cost of some equipment for Cruz (a physio mat) and to pay for some of Cruz’s therapy (horse-riding, physio, speech therapy). Tammy says “We contacted Sunshine Butterflies. They were so lovely and easy to deal with. They asked me to put together a blurb on Cruz and a photo, and to fill out some paperwork. They then got in touch with the link, so I could put it up on my Facebook page to raise awareness.” Tammy explains why they chose to fundraise through a website rather than trying the more ‘traditional’ forms of fundraising, “To be honest most people look online now as it is quicker and more convenient. I was able to reach more people faster. It was all set up within a week. “We raised the money we were hoping to. It was amazing, we were so thankful and appreciated it so much. The experience really showed us that there are some very, very kind people out there. I thought doing it online was great too. If I needed to, I’d do it again. I wouldn’t do anything differently,” Tammy said.
WINTER 17
47
Roberts family
Our family consists of: Natalie (Mum), Mauro (Dad), Grace (6) and Chiara (3).
We live: Melbourne, Australia.
Chiara is dealing with: Chiara had a stroke in utero and because of that has been diagnosed with: • b ilateral peryisylvian polymicrogryria (poly=many, mico=small, gyria = small folds within the brain) microcephaly (micro=small, cephaly = head) • quadraplegia cerebral palsy • talipes = clubfoot We’ve been told that it’s unlikely she will be able to walk, talk or live a long life. We were also told there was an 80% chance that seizures would develop at some stage.
How we manage that: Chiara was born with a clubfoot but we did not receive the rest of her diagnosis until she was five months old. Until then, we thought we had a healthy baby with only the clubfoot issue. The clubfoot treatment began when she was 10 days old and consisted of multiple casts, splints, and operations. Most of our time was spent in The Royal Children’s Hospital. It wasn’t until Chiara’s brain MRI scan that doctors picked up a much more serious diagnosis than just the clubfoot. We were immediately linked to early intervention services, which involved physiotherapy, occupational therapy and speech therapy. They also assisted us with various special needs equipment to help Chiara sit and stand. We also had a lot of specialist appointments in various departments at the hospital. Further still, we took part in many intensive and weekly treatment programs locally, interstate and overseas to further help Chiara reach her full potential. We’ve used therapies such as Feldenkrais, Hydrotherapy,
Anat Baniel Method, IAHP, MNRI, Osteopathy, Naturopathy, Cold Laser Light Therapy, and Music Therapy. We are looking into NAPA this year as well. On top of all the treatment sessions, we prioritise family time. We’ve got creative with how we spend our time in waiting rooms, and in the car rides to and from hospital and therapy sessions. We can thank our eldest daughter Grace for bringing fun, creativity and joy to this side of the journey. As much as we can we spend time together in nature and let out a big sigh!
Our favourite place to go as a family is: Anywhere in the great outdoors from the mountains to the sea. Living in Melbourne/Victoria we’re blessed with awesome cafés, galleries, parks, organic markets, festivals, wineries, hot springs, live music and more – there’s always something to do.
Our favourite activity is: To be honest, it’s the simple things. We value simplicity and family time like never before. Just having the freedom to be able to go to the local park, or a swim at the beach instead of attending a hospital appointment or long
48
WINTER 17
therapy sessions is amazing! Getting the girls out into nature and connecting with friends and family is what rocks our world. Seeing Grace and Chiara happy and enjoying life beyond the limitations that we’ve been dealt with is the best feeling. Mauro and I treasure some time out too. We go on date nights and create space for the things we love outside of parenthood. Being a yoga teacher, I love rolling out my mat - even if some days all I can manage is to sit and breathe. Self-care: it’s my anchor! Second Home in Eltham is our local café and it’s literally like our second home! After some rough and wild sleepless nights with Chiara, or long sessions at the hospital, we have rocked up to this café beyond exhausted and left feeling nourished and loved. Isn’t it amazing what a good coffee or chai and a huge welcome hug can do? The staff feel like family.
Our biggest challenge is: The additional physical care our daughter requires. She is unable to sit, stand, walk, talk, self-feed, dress or toilet train. There are so many secondary medical issues associated with the inability to walk, so we are constantly trying to juggle it all. We need to make sure all her food is blended, as she is unable to swallow food that isn’t pureed. We keep her diet rich in organic foods and keep movement therapies as a priority for her. We’re constantly trying to keep ‘balance’ in her nutrition, her movement, her digestion and elimination, her sleep, her communication and access to the world around her. On top of the hundreds of hospital visits and broken sleep, there is a lot to manage. Another huge challenge is managing the emotional upheaval that you experience when coming to terms with your child’s diagnosis. It can turn everything in your life upside down, so you need to create time and space to honour all the areas of your life that are impacted: your
health and wellness, your marriage, your other children, your family life, your emotional wellbeing, your work life, friendships and so much more. Things change and we need to adapt and transform on many levels. Grief will appear at many stages along the journey, as milestones are missed, first words are never spoken or first steps aren’t taken. I recall bursting into tears at a local park when a neighbour asked how I was. My response took both of us by surprise. The sun was shining, Grace was playing on the equipment but all of a sudden, out of nowhere, the tears flowed and flowed. It’s like that. You roll with it and in moments where the grief surfaces, I always honour it. I try not to push it to the side, or make excuses. Because after all, we are dealing with a lot from the dayto-day. It’s only natural given the circumstances to have some tough moments.
Best parenting tip: Trust your intuition. It’s your number one innate guide. You can easily be distracted by information overload from external forces. But always come back to your intuition and heart – it’s your anchor. Have fun! It’s so easy to get lost in the rollercoaster of the special needs world that sometimes we forget how to find our fun in the world.
The best/most useful advice we’ve been given: Do what you can and leave the rest to God or The Universe. It’s true, you can only do your best and you have to surrender to the rest. Otherwise you’re heading for burnout. Do what is best for your family, no one can truly understand what you are dealing with day-to-day, hourto-hour. Self-care should be part of your daily routine, for each family member, despite the extra care required by your special needs child.
And the most annoying/unhelpful advice (there’s always one): “It can’t be that bad, at least she can smile, she must be so happy.” It’s with good intentions, but Mauro and I cringe when we hear this. Mostly because we get to see, firsthand, many moments of pain and discomfort that Chiara endures. There are just as many tears as there are smiles that she sends out to the world. As a family, we just choose to focus on the positives. As her parents, we wish nothing more, than for Chiara to be happy, healthy and have the freedom to live each day without such huge challenges.
WINTER 17
49
I completely understand that it must be difficult for people to know ‘how to respond’. I certainly had no idea myself, prior to becoming a special needs mum. As a community, we need to honour that families and more so, the special needs children themselves, are facing some tough battles in their daily life.
whole new world of freedom for us. We could go on family adventures and if we didn’t have her pre-cooked meals with us from home, we could simply buy a meal out, blend and voila!
This journey has taught us:
Katmandu child carrier backpack: we love heading on adventures and when we don’t have Chiara’s wheels, we have the backpack for places that we can’t access easily. It’s been so much fun taking her on walking tracks to waterfalls.
That miracles happen every single day. These children teach us the value of our collective, extraordinary human spirit. We learn about ourselves, what we stand for and what we believe in. It teaches us not only about life, diversity, hardship, courage, resilience, love and acceptance, we also learn about ourselves. We discover parts of ourselves that would otherwise lay dormant. This is a mystical and phenomenal gift our children give to us, and maybe even the reason why they chose us in the first place? It has taught us to listen to our intuition and learn when we need to say ‘no’. We’re often running on tanks that are close to empty - so we prioritise our health and wellness, peace and relaxation more than ever. Knowing when to rest and ask for help is key to managing the day to day.
Chiara loves her Squiggles standing frame, she totally loves standing and playing with her big sister in it.
You can follow Chiara’s journey on the social media links below: www.facebook.com/chiarasjourney www.instagram.com/chiaras.journey www.chiarasjourney.com www.facebook.com/miraclemamacommunity www.instagram.com/_miracle_mama_ www.miraclemama.com.au Natalie also blogs for Source Kids.
And most importantly, to have fun! We can’t give away all our sense of adventure and happiness because of our circumstances. I believe that no matter what, we all have the potential to live a life beyond our wildest dreams!
We would never manage without: Our humour and sense of adventure!
Products we love: Tupperware turbo chef: we provide Chiara with an amazing organic diet and blending food is a must for her, as she is unable to chew at this stage. My husband discovered this manual food blender and it opened up a
Personal experience with special needs children • Modern Cloth Nappies • Incontinence aids for special needs • Swim nappies • Swim Aids for special needs • Swipes: Washable wipes system • Cloth Nappy Doctor assistance with over 20 years combined experience with babies, toddlers and older children. • Large selection of swim nappies and cloth nappies in Australia. • Washable, reusable lunch bags and wraps
W:
apikali.com.au
B: clothnappydoctor.com.au E: contact@apikali.com.au F :
facebook.com/ApikaliModernClothNappies/
50
WINTER 17
Special Needs Teacher Name: Emily Whish-Wilson Ages you teach: I have been fortunate to teach a few age groups in the special education space. In 2016 I taught in the senior department for the first time and I had a group of nine students between the ages of 13-16 years old. This year I am again teaching in the senior department but with a new group of seven students. I enjoy this age group as there are so many fantastic connections and opportunities when working with the students. How long have you been teaching for? I have been teaching for eight years, with the last five being in special education. Why did you decide to become a special needs teacher? Itâ&#x20AC;&#x2122;s been a journey for me. I always knew I wanted to be a teacher but it wasnâ&#x20AC;&#x2122;t until I got into special education teaching that I knew it was something I really loved and wanted to do. Working with special needs children can be difficult - but the rewards are amplified. Whilst I feel that my experiences and the learning gained from teaching in the special needs area has broadened and deepened my approach to all learning, I have also developed specialised, niche expertise. Special education has become my career of choice.
WINTER 17
I have been lucky to have worked with some amazing teachers throughout my career thus far. I’ve learnt to be more proactive about what I want and where I am going. If you want something, you go out and get it. You don’t wait for it to come to you, because it might not. There have been teams I’ve been a part of or people that I’ve worked with because I’ve reached out and just said, “Oh hey I’m interested in being a part of this. How can I get into or get better at this?”. If I’m not feeling fulfilled by the work that I’m doing, I know it’s my responsibility to either go out and change it, learn about certain positions, or enrol in a new course I might be interested in. Special needs teaching does fulfil me and in turn, I keep working at how I can develop and improve to ensure that my teaching is at the level where the students in my care reach their full potential. Special needs teaching was something I wanted to do and by asking questions, making mistakes, annoying people and trying different strategies, I found my place in the teaching world. What is your teaching philosophy? There are so many people who have helped shape my philosophy – students, teachers, parents, friends, educators. I have worked with a number of great teachers, observed them in action and been attuned to the traits they possess. I think reflecting daily, asking questions or getting feedback is also imperative when it comes to this whole teaching game. That aside, my beliefs and values will always be based around the achievement of best outcomes for students and a belief that all can achieve. Being open to research and evidence-based practice is also essential. Fundamental to this is addressing the needs of the students you are teaching. I believe that to be an effective teacher you need to know your students and use that knowledge to thoughtfully plan learning goals and teaching strategies. I’ve always seen my role as more of an
51
influencer or even a ‘facilitator’ of student potential. I think if you go into each day thinking, “I am going to make sure every student achieves to their full capacity today”, that’s a great thing! You will always have your tough days but I think if you can go in to school with that thinking each day, things will keep getting better and better. I also think it is really important to create work programs that reflect each child’s ability, needs and interests. I know that when I’m teaching, I observe the interests of children, and sometimes their fixations, and through this I can engage them. Structure is also important. The children know what is expected and what will happen next, allowing them to generalise newly acquired skills. I try to ensure that the teaching program provides functional skills that will be useful in broader life, and that they address specific social and communication concerns. My teaching philosophy is based around focusing on skills that will increase independence, improve functional performance and act as enablers for students to control their environment and ultimately open up a pathway for later life. Schedules, such as general daily work programs, individual work skill lists/sequence charts, and daily routine organisers, reduce feelings of unease and provide sameness, increasing a student’s opportunity for success. They increase independence, access to the curriculum, and participation in the school community. They also aid in the management of difficult behaviours. They help to set behaviour limits, reduce negative teacher attention and as a behaviour management tool they can indicate that a preferred activity will follow a non-preferred one. For a number of the students I work with, schedules are also helpful for them when in the playground at lunch time. They help to alleviate anxiety and behaviour issues. Which leads me back to my opening sentence (and probably my biggest belief in teaching): knowing the child and what they need to learn. I believe it is important to know all aspects of the child’s identity: physical,
52
WINTER 17
intellectual, social and emotional. When this information is apparent, a program can be developed that is appropriate, interesting and stimulating for the child. What is your favourite activity to do with the children? This year working with my senior class, I have particularly enjoyed our cooking program. Each week, as a class, we choose a recipe that is healthy, hearty and delicious, and then go out to the community supermarket to buy all the ingredients. We cook together and then sit down at the table to enjoy, and talk about, the dish we’ve made. I love doing activities that children love participating in, but also activities that they will benefit from. We finish with cleaning up, and whilst this isn’t as much fun as the cooking, it also incorporates those life-skills that will help students later on. What do you wish parents would tell you about their child at the beginning of the school year? I think as a teacher it comes down to establishing a positive relationship with parents right from the beginning of the year. This enables teachers to establish and reinforce practices between home and school. Sometimes it takes a number of approaches or experimentation to find what will work for a child as every family structure/ situation is different. I like to conduct SSG meetings each term, working collaboratively with parents and support staff to construct ILPs and programs. In these meetings, I try to establish an environment where parents feel comfortable to express any worries, goals or wonderings they may have, about school or home. In these meetings I also ensure that the child’s strengths are identified as these can often be used to support learning in another area. Where it may be of assistance I share rubrics, which can assist parents in understanding the progressions, what might be future steps, and achievements to date. I use ongoing monitoring in my feedback to parents. Reporting is most effective in the partnership you establish between parents, and again that is where you can build a great relationship based on trust and mutual pathway of where you are going with their child.
What’s your favourite part of your job? I enjoy seeing students achieve their goals, including the small progressions and victories along the way. Teachers have an incredible opportunity to develop a positive impact in the lives of their students when they can build positive relationships with them. Understanding that the right support, role modelling and encouragement can enrich and enable each child to enjoy success, and reach their potential, is an incredible part of the job. Are there any toys/books/products you recommend? There are so many I love! I am always on the lookout for innovative new products. I like exploring different ways to support students’ wellbeing, especially when you see how different products or toys break down certain barriers for children when it comes to their learning. I guess that is effectively where the concept of the BUSTLE Pack (that I developed – www.bustlebags.com.au) grew from. I’ve witnessed how great deep pressure therapy is, so incorporating that into a backpack was something I really believed in and thought could make a difference. I also love using IT computer apps such as Clicker 5 and 6 on the interactive whiteboard and like to maintain an openness to any evidence based strategy/approach that will improve the learning outcomes for students.
The NEW DINO cot Alphacare is proud to launch the NEW DINO cot to the Australian market from Hermann Bock in Germany. The innovative DINO cot is perfectly tailored to the needs of children and adolescents requiring care.
AS4801
The DINO sets the standard with innovative functionality and design. Visit our website for more information.
13 0 0 9 3 0 9 3 0 • w w w. a lp h a c a r e.c o m. au • s a l e s@a lp h a c a r e.c o m. au SKAutumn2017_Alphacare_181x66_03.indd 1
15/05/17 9:53 AM
WINTER 17
Directory Jump online and find the perfect product or service at
www.sourcekidsdirectory.com.au
Toys and Resources
53
We recently revamped our online Source Kids directory, bringing you a huge range of product and service providers across a range of categories including aids and equipment, clothing and accessories, education, health and nutrition, professional services, sport and recreation, support services, therapy providers and toys and resources.
Toys and Resources
Toys and Resources
ESTABLISHED FOR OVER 30 YEARS
Awesome Autism Resources - QLD www.awesomeautismresources.com.au 0438 879 546
Jellystone Designs - NSW jellystonedesigns.com 0402 046 839
Aids and Equipment
Aids and Equipment
Windmill Educational Toys & Equipment TAS/VIC/SA www.windmill.net.au 03 6334 9996 Aids and Equipment
EDSCO - QLD www.edsco.com.au 07 3350 2677 Therapy Providers
Link Assistive - SA linkassistive.com 08 8330 4102 Therapy Providers
Special Needs Solutions - QLD www.specialneedssolutions.com.au 07 5597 4321 Therapy Providers
Beyond Boundaries Rehab - NSW www.beyondboundariesrehab.com.au 02 4934 1264 Support Services
AEIOU - QLD aeiou.org.au 1300 273 435 Clothing and Accessories
Therapies for Kids - NSW www.therapiesforkids.com.au 02 9519 0966 Clothing and Accessories
Noahâ&#x20AC;&#x2122;s Ark - VIC noahsarkinc.org.au 1800 819 140
Little Big Feet - QLD www.littlebigfeet.com.au 07 3378 5935
Ninja Babies - QLD ninjababies.com.au 0422 068 159
54
WINTER 17
Competition CORNER Apikali Win a Swipes washable wipes complete kit with 20 additional bamboo wipes from Apikali, valued at $109. The winner will have the opportunity to personalise their complete kit by choosing their wet bag, stickers and fresh oil.
Kloudsac Win Elle the Elephant or Happy the Dog Animal Bean Bag cover (NOT filled), valued at $119. Note, you will need to purchase beans.
Lunables Win one of two packs of Magic Waxi Jumbo gel crayons from Lunables, valued at $16.95. Or go in the draw to win one of three packs of Neon Magic Waxi gel crayons from Lunables, valued at $10.95.
Enter the above competitions online at www.sourcekids.com.au/win
Suppliers of educational equipment, toys and resources for special needs, primary school, pre-school and playgroups.
MElboUrNE
591 Whitehorse road, Mont albert viC 3127 (03) 9830 4336
adElaidE
252 the Parade, Norwood sa 5067 (08) 8332 5262
laUNCEstoN
256 Charles street, launceston tas 7250 (03) 6334 9996
hobart
243 harrington street, hobart tas 7000 (03) 6231 0499
EstablishEd for ovEr 30 yEars
WINTER 17
55
What’s on calendar June
July
CMV (Congenital Cytomegalovirus) Awareness Month www.nationalcmv.org
4
Multiple Sclerosis Walk and Fun Run – Melbourne www.mswalk.org.au
12
Gold Telethon – Sydney Children’s Hospital
www.goldtelethon.org.au
16
‘Wheel make a change’ by CPL (Cerebral Palsy League)
www.cpl.org.au
15 National Buddy Day
www.betterbuddies.org.au
18
Multiple Sclerosis - Brissie to the Bay
www.brissietothebay.com.au
24 Red Nose Day
www.rednoseday.com.au
20-26 World Continence Week
www.continence.org.au
2
Corpus Callosum Awareness Day www.ausdocc.org.au
3-9 Sleep Awareness Week
www.sleephealthfoundation.org.au
3-9 Alopecia Awareness Week www.aaaf.org.au
19-21 Occupational TherapyKey Australiapoints
physio to remember
Conference and Expo – Perth WA www.otaus.com.au
21 National Pyjama Day
www.thepyjamafoundation.com • Accept the invitation (if your child wants to go!) • Ring the parent and do some gentle investigating. How many
22 Fragile X Awareness Dayactivities are happening? Is the children are attending? What park, hall or home accessible for your child’s needs? What www.fragilex.org.au toilet facilities are there, if required? Indoor rock climbing
example, are notFibrosis) fun if you can’t participate. Crazyparties HairforDay (Cystic
Facilities may have modified harnesses and specialised instructors. A conversation with the host asking about this is best done a week before the event, not as you arrive at the venue! Let the host know if your child is super sensitive to noises, allergic to latex or certain foods.
www.cysticfibrosis.org.au
August
• A nticipate that your child might not need to stay the whole time. Many a party for anyone is made memorable by leaving things turn ugly! Consider sleep times for your child or Jeansbefore for Genes Day how much stimulation www.jeansforgenes.org.auor party food they can cope with. This is true for all of us!!!
4
• Make sure that you can stay for the main event – cake cutting, 7-13 Haemochromatosis Awareness Week puppet show, face painting! Explain to the host beforehand
www.haemochromatosis.org.au that you may not stay for the whole event.
Sign up for updates Sign up to receive our weekly email updates with information, latest news, blogs, offers and competitions to your inbox. It’s free and easy to sign up – head over to our website www.sourcekids.com.au and sign up now.
• Don’t be a helicopter parent! Let events unfold and watch 21-25 Hearing Awareness Week from afar. Often another parent or child will step in to make
www.hearingawarenessweek.org.au suggestions about how games or activities might work better for your child.
21-27 Brain Injury Awareness Week • Most of all – celebrate the event!
www.braininjuryaustralia.org.au As a parent of a child with special needs, you can be a great educator of other parents on how to make a party inclusive. • P in the tail on the donkey/ rabbit might be done sitting down or on a board that can be placed at different heights or on a wheelchair tray.
Maximise your child’s physical potential Experienced physiotherapists of children with mobility issues, developmental delay or musculoskeletal and orthopaedic conditions. We focus on family centred practice and use common sense and empathy when caring for our clients. Collaborative goal setting is an integral part of our service.
(07) 3324 2490
• Fully equipped rooms and gym • One on one sessions • Orthotic and equipment prescription • Gym circuit after school and Saturday mornings Maximise your child’s physical potential • Co-ordinated kid classes
• Coorparoo
Experienced managers of children with mobility issues, developmental • Gold Coast delay or musculoskeletal and orthopaedic conditions. We focus on family Albany Creek • Home and hospital visits centred practice and use• commonsense and empathy when caring for our clients. Collaborative goal setting is an integral part of our service.
• Yoga and relaxation
•Equipment & orthotic prescription •Fully-equipped rooms •Gym
•Exercise and circuit classes •Hydrotherapy •Home & school visits www.movementsolutions.com.au
(07) 3324 2490 movementsolutions.com.au
Bringing fun, practical and unique products to children with special needs in Australia. Australiaâ&#x20AC;&#x2122;s newest online disability store has just launched with a great range of products including EazyHold straps, EZPZ mats, Reflo cups and Snug cups. The range is growing daily so make sure you subscribe to receive all the latest product releases.
www.childrensdisabilityproducts.com.au