ISSUE 16 | WINTER 2018
THE
FOOD ISSUE DEALING WITH YOUR CHILD’S FOOD CHALLENGES
MADELINE STUART – STANDER PRODUCT REVIEW – KLEEFSTRA SYNDROME – HANEN THERAPY
SDN Beranga Early Intervention and Autism Preschool
Open Day
18 7 July 20
128 Hartin gton S t Rooty Hill
Therapy and support as unique as your child Register to attend online. Missed open day? Book a private tour and speak with our director.
www.sdn.org.au
1300 831 445
contents
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FEATURES AND ARTICLES 8
HE FOOD ISSUE: picky eating vs problem T feeding, feeding therapy, enteral feeding, ways to make food fun, once upon a mealtime
FUNKY CHICKEN CHOOKS IN SPACE
30 NDIS: the good and the bad
The award-winning speech pathology book Funky Chicken Chooks in Space is fantastically funky fun! This tale will engage both adults and children. It has strong themes of identity and belonging but will also encourage children to develop phonological awareness via its rhyming format.
31 NDIS rollout
www.funkybooks.com.au
16 Standers product review
40 Madeline Stuart – a shining light 42 Travelling with a wheelchair 46 AllPlay bringing footy to kids with disability 50 Let’s go for a walk – the Hanen way! 53 Kleefstra syndrome
REGULARS 5 6 23 25 26 45 55
We Love Welcome Did you know… What’s on calendar Family profile Cooper’s travels Competition corner
LOU KNOWS WHAT TO DO: BIRTHDAY PARTY With his special bubble wand, Lou always knows what to do and how to behave at a friend's birthday party. He knows what to expect (it's going to be loud) and how he should act. An excellent read for children living with autism spectrum disorders! www.dymocks.com.au
THE FOOD ISSU E
Food! It's o ne of the greatest pa renting challenges. We hope th is issue will giv e you some insight and suggestion s to try with you r child.
FOOD DETECTIVES Parents’ Voice is an online network of parents who want to improve the food and activity environments of Australian children. We love their current campaign ‘Food Detectives’, where they expose the truth about children’s foods on the market and the real ingredients they contain! www.parentsvoice.org.au
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WE LOVE CRAYTE WEIGHTED CUSHION An ideal option for a reading or screen time companion, they are made from 100% cotton drill or canvas and customised to suit your child’s comforts. Did we mention the awesome designer fabrics they come in, or the large range of blankets also available? Go and check out the range, you won’t be disappointed. www.crayte.com.au
LITTLE ROOM Designed for children who are visually impaired, it presents an opportunity to explore unknown objects and help become familiar or experience differences between auditory and tactile stimuli. It is also known to help children with SPD - Little Room provides a calm space to discover. www.capfurniture.com.au
CARECIRCLE APP CareCircle is a global initiative bringing together families, caregivers and experts onto a single, simple and secure mobile platform. The purpose – to support those lives altered by living alongside health conditions and diseases, and to enable access to timely, relevant and affordable options of support and expertise, specifically for their benefit as non-clinical caregivers. www.carecircle.com.au
FREEDOM TRAX CHAIR This is a game changer folks! How to make the world accessible? Freedom Trax is built around the driver and engineered to offer unparalleled accessibility, range and maneuverability. A motorised track system designed to transform nearly any wheelchair into an off-road vehicle that can traverse sand, snow, gravel and mud! www.paragonmobility.com.au
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WELCOME
welcome
TO SOURCE KIDS SOURCE KIDS LIMITED PO Box 690, Noosaville QLD 4566 ABN: 36 614 552 171 www.sourcekids.com.au Send all letters and submissions to: info@sourcekids.com.au
WRITERS AND CONTRIBUTORS Nicole Davis, Rachel Williams, Emma Price, Naomi Sirianni, Kirsten Stewart, Valerie Gent, Kirsten Harris, Ian Beaton, Opal Halliday, Julie Jones, Cooper Smith, Brittany Da Silva, Leigh McGregor, Janelle Chirio and Kelly Wogas.
As this issue hits the shelves, the Source Kids team is working around the clock to deliver the next iteration of the Source Kids offering – the Source Kids Disability Expo that will be held in Brisbane in two weeks’ time. Five years ago, when I decided there was an insanely big gap in information available to parents and carers raising children with a disability – I thought “Wouldn’t it be great if parents could go to one place and look at all strollers/wheelchairs/walkers (insert any given product type!) at the same time so they could actually compare and try them out like you could in a regular kids or baby store.” While we’ve led the way in filling this gap in information through our magazine, website, directory, social media and email updates (reaching 400,000+ people every month), our expo adds an additional opportunity for our audience to get hands on – to talk to product and service providers, touch and feel products and test them out. I can’t wait to welcome 3000 people through the doors of the Brisbane Convention and Exhibition Centre in a couple of weeks to meet over 130 exhibitors and sponsors! Hats off to our amazing team, in particular Naomi Sirianni, who have been working relentlessly for many months to make this event so incredible.
ADVERTISING BUSINESS DEVELOPMENT MANAGER Naomi Sirianni – 0447 755 043 naomi@sourcekids.com.au ADVERTISING ACCOUNT MANAGERS Kelly Wilton – 0499 017 354 kelly@sourcekids.com.au Carmen Smith - 0438 847 696 carmen@sourcekids.com.au
DIGITAL CONTENT EDITOR Nicole Davis nicole@sourcekids.com.au
GRAPHIC DESIGN Richard Deverell, Dev Design & Creative www.devdesign.com.au
And if you missed the announcement, we’ll be bringing the expo to Melbourne on 29-30 March 2019 – make sure you follow our event page on Facebook if you live in Victoria!
PUBLISHER / CEO
Just to add to the excitement here at SK headquarters – this issue we launch our Queensland issue to coincide with the expo. In it you’ll find information specific to Queensland including events, family profiles and a range of amazing businesses to talk to.
Editorial and advertising in Source Kids is based on material, written and verbal, provided by contributors and advertisers. No responsibility is taken for errors or omissions, and opinions expressed do not necessarily reflect those of the publisher. All material in Source Kids is subject to copyright provisions. No part of this publication may be reproduced without written permission by the publisher.
So about Winter 2018…we tackle one of the greatest parenting challenges – food! We explore picky eaters, problem feeding, feeding therapy, enternal feeding and show you some great ways to make food fun. We also feature Madeline Stuart – a rising shining light, Kleefstra syndrome, Hanen Therapy and review all things standers. We hope you love our Winter issue and can’t wait to see our Queensland audience at the expo in a couple of weeks!
Emma Emma Price
Emma Price
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
CEO/FOUNDER
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WE LOVE P POD The P Pod looks like a beanbag chair but it is so much more! Designed to allow children and young adults with additional needs to interact with their families in a fun and engaging way whilst still offering substantial postural support. www.mandephysiosolutions.com.au
STAMP YOUR CHILD’S CLOTHES! How about this brilliant clothing stamp – it is the fastest way to label clothing and it dries instantly, is long lasting, waterproof and it’s also non-toxic. Now that’s a stamp! Personalise the stamp with a name or graphic and never lose your child’s clothing at school again. www.stuckonyou.com.au
PICTELLO APP The talking visual story creator! Does your child have difficulty speaking and sharing their news? Pictello is great for social stories, schedules and language learning. It is loved in the classroom but imagine using it at home too! www.assistiveware.com
WE LOVE DEE’S TEES AND ACCESSORIES Quirky clothing designed to promote awareness within the community and help those on the autism spectrum. A quick slogan on a shirt when out and about may just help the general public view things a little differently… www.deesteesandaccessories.com.au
FLUX WALKER The FLUX walker is used behind the child, so that there are no structural parts in front whilst the child is walking. The open-fronted frame encourages upright posture and natural walking movements so that the child is using and developing their own natural walking style. A trendy new range of colours is available – so let FLUX grow with your child. www.dejay.com.au
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THE FOOD ISSUE FOOD! IT’S ONE OF THE GREATEST PARENTING CHALLENGES FOR SO MANY – AND FOR THOSE ON THE SPECIAL NEEDS PARENTING JOURNEY IT IS OFTEN AMPLIFIED AS MAKE OR BREAK FOR OUR KIDS. We all need food, especially growing kids, but when you’re faced with picky eaters, sensory issues, fine motor problems, overeating or the inability to eat, there's a fair chance you’ll be at your wit’s end. So, we’ve put together the food issue and explored some of these challenges; we hope the following pages will give you some insight and suggestions to try with your child.
a new food
PICKY EATING VS PROBLEM FEEDING WHAT IS NORMAL AND WHEN SHOULD YOU GET HELP? BY KIRSTEN STEWART In many families with young children, mealtimes can be stressful. But how do you know when your child has normal fussy eating, or whether their picky eating may be a problem requiring expert help? During infancy, when babies start solids, they tend to eat a variety of different foods and progress through the textures from pureed to mashed to soft, and then onto regular family foods by 12 months of age. The ensuing toddler years are when families find the situation can change. Toddlers and even pre-schoolers are renowned for their fussy eating, and may exhibit a range of behaviours such as rejecting familiar foods, refusing a range of foods, being apprehensive to try new foods, limiting the variety in their diet (vegetables are typically the most limited food group), and going through food fads. Young children may have a variable appetite, mealtimes can take 20-30 minutes, and behaviour during mealtimes can be disruptive, for example refusing to sit at the table, constantly leaving the table, or deliberately dropping food from their highchair. This type of fussy eating is a normal part of development. The Division of Responsibility by Ellyn Satter, is used by health care professionals working with parents of fussy eaters, and provides recommendations to
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help combat these issues. As a parent, it is your job to decide what food is eaten, when it is eaten, and where it is eaten. This means you choose and prepare the food, provide regular meals and snacks, make eating times pleasant, model how to behave at meal times, limit food or drink (except water) between meals and snacks, and let your child grow in the body that is right for them. It is your child’s job to decide if and how much they will eat of the meal or snack that is offered. Part of your role as a parent is to trust your child to eat the amount they need, learn to eat the foods the family eats, learn to behave well at meal times, and grow predictably in the way that is right for them.
DO: - Set regular, predictable times for meals and snacks - Eat together at the table as often as possible - Serve food in the middle of the table and allow each person to serve themselves (assisting children where required depending on their level of ability) - Try offering two courses, for example, entrée and main, or main and dessert, to provide two opportunities for your child to eat from the food selection - Keep in mind it can take multiple exposures (14 or more!) before your child may accept
-L imit meal times to 20-30 minutes -A cknowledge your child when they try new foods or sit properly at the table -S tay calm - remember your child’s appetite can vary from day to day, some days they will eat lots, some days they will eat a little
AVOID: - Skipping meals or snacks - Eating on the go - Filling up on food or milk between meals and snacks - Distractions at meal times such as the TV - Force feeding or bribing your child to eat or try new foods - Negative comments about a food or your child’s eating behaviour Signs that your child may have more significant problems with feeding that go beyond what is developmentally appropriate include consistently calling them a picky eater whenever you see your GP or child health nurse, or if they restrict their range or variety of foods to less than 20 different foods, cry and meltdown at the sight of a new food, refuse entire food groups or foods of a certain texture, almost always eat different foods to the rest of the family and often do not eat with the family. Mealtimes usually take longer than 30 minutes despite offering their preferred foods, your child may throw or spit out food in protest to eating, and their growth falters as a result of their poor appetite and picky eating. Another aspect of problem feeding can arise if your child has become overweight or obese due to an increased appetite.
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NUTRITION BOOSTERS You want your child to eat as varied a diet as possible but if they do have a very limited diet try to make the most of what they will eat by adding (or hiding in some cases!) ingredients that pack a punch whether it be from calories, fat or other nutrients: Cheese – sprinkle it over everything! Full fat yoghurts – add to smoothies, serve with fruit etc. Cream – mix into sauces whenever you can. Nut butters – another great addition to smoothies or as a spread for toast. Peanut butter is a great dip for apple slices. You can also sprinkle chopped nuts on food if your child doesn’t have any issues with nuts. Hummus – protein rich and packed with calories. Honey – drizzle on toast as a way to boost calories. Oily fish – nutrient rich and full of good fats. Cereals – watch out for the sugar content but these are a great way to up iron intake and a good source of fibre. Smoothies – a lifesaver for many parents and a great way to include many of the above along with nutrient packed fruits and veg like spinach, kale, avocado, berries etc. Sweet potatoes – rich in vitamin A. Serve as fries with a high fat content dip if you need the calorie boost.
Feeding difficulties can be common in children who have experienced a disruption to either the mealtime environment and/or feeding development. These children may have a history of prematurity, difficulty breastfeeding, reflux, constipation, tube feeding, choking or gagging, severe food allergies or developmental delays. If you are experiencing any of these problem feeding challenges with your child, you can seek expert advice from a health care professional, such as an Accredited Practicing Dietitian, who can link you in with other therapists as required. Kirsten is a mum to three children and has experienced fussy eating first hand! She has been a dietitian for 15 years, and having specialised in paediatrics, she has worked with families to help solve problem feeding issues.
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FEEDING THERAPY
FINDING WHAT WORKS FOR YOUR CHILD BY VALERIE GENT, PAEDIATRIC FEEDING SPEECH PATHOLOGIST
Feeding difficulties in early childhood are common and can affect approximately 25% of typically developing children and up to 80% of children with special needs. The cause of feeding difficulties can be numerous including: 1. O ral motor delays (difficulties with chewing) 2. Difficulties with swallowing 3. Oral aversiveness and hypersensitivity There are also resulting and compounding factors related to anxiety with food and behavioural difficulties around mealtimes as well as nutrition and poor growth (tube feeding etc.) issues. Underlying issues causing food refusal and feeding difficulties can also include prematurity and other diagnoses as well as allergies and reflux. A good feeding assessment is one that takes all of these potential factors into consideration (with further referrals to other specialists as needed) as well as team collaboration with other allied health professionals. If you are looking at getting some support for your child’s feeding/fussy eating difficulties, please make sure that your therapist: A. H elps identify with you what the underlying issues are that might have contributed to your child’s feeding difficulties – a thorough feeding assessment will do this. An oral motor assessment by a speech pathologist will also assess the muscles in your child’s mouth and identify any physical issues at play. B. Works with you to individualise a program that focuses on: • The strengths of your child: some children are quiet, some are chatty, some need time to process, some are very busy. •T he difficulties for your child: sensory issues, chewing issues, swallowing issues, communication and motor issues. • Your goals as a family – what foods would you like your child to eat? For example, perhaps you eat capsicum all the time and this is a common vegetable for your children. What meals would you like your child to be able to join in as a family (e.g. we love eating tacos and this is a frequent weekly meal for us), where would you like your child to eat (e.g. we eat together as a family at the dinner table and eating at cafes and pubs is a common family outing for us). •Y our goals for your child – what do you hope to achieve with feeding therapy? The challenge is that every feeding program is different and as a parent I encourage you to understand why your therapist picked that program for your child:
• Some are very structured and will use “time out” and “spoon removal” techniques to make a child eat. • Some are less structured but still therapist-directed where a therapist plays with food whilst systematically getting the child to touch, smell and finally eat a food. • Moving towards less therapist directed programs; these are programs that encourage therapists to understand the sensory world of a child and their family to help the feeding situation at home. • And the most child directed program and opposite to the “time out” technique is the “parents provide – children decide” philosophy. The first approach listed above is not my personal preference. I prefer a more trustbased approach that helps a child explore and ultimately love food – not to be forced to eat. But that’s a conversation you need to have with your therapist. I’ve just scratched the surface of the different types of feeding programs available so that you know as a parent that there are many ways to help your child’s feeding; it isn’t “one size fits all”. My take home message to you as the parent seeking feeding therapy for your child…. Please be involved in therapy for your child – understand what the session is working on and how it helps move towards your life goals for your child. Always be in the room with your child, therapy must first “do no harm” and if you or your child are not happy then trust your gut instinct. The sign of a good feeding therapist when you meet for the first time, is one who doesn’t jump to the only feeding program they know. It’s one who starts trying to understand your child. It is one who communicates and works as a team with your other therapists, doctors and teachers so that your child’s needs are best supported before they even begin therapy. It’s one who truly stops and listens to you – your journey, your fears and your hopes for your child. It’s like finding the pieces of a puzzle and helping a family begin to put those pieces back together again. And for a short while, walking that feeding journey with the child and their family, a truly humbling and rewarding experience for me as a feeding therapist and speech pathologist. Valerie Gent is a Newcastle based speech pathologist with 15 years of experience in children and babies with feeding difficulties. She has worked in hospitals and in special need schools and rehab teams. She currently runs a private practice ‘Let’s Eat! Paediatric Speech Pathology’ in Newcastle NSW. You can follow her on her blog and find more details via her website www.letseatspeech.com.au, Facebook and Instagram.
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N U E
W
nfl avo ure d
BY KIRSTEN HARRIS, REGISTERED NURSE
ENTERAL FEEDING WHAT YOU NEED TO KNOW WHEN YOUR CHILD LEAVES HOSPITAL
The transition from hospital to home with a child that is tube fed can be a very daunting one for caregivers. Moving from a hospital environment where support services are in place 24/7 to suddenly coping on your own at home is bound to raise anxiety levels in even the most confident of people. Quite often I find caregivers questioning their ability to cope with the enormous responsibility of tube feeding and they will also ponder how this change may alter the family dynamics once home. As a Registered Nurse supporting enterally fed patients transitioning from hospital to home for over 16 years, it has been my absolute duty (and pleasure) to ensure caregivers acquire the necessary skills and expertise to safely manage tube feeding themselves. In my role as National Nurse Manager, I am fortunate to lead an exceptional team of six Registered Nurses across Australia that provide face-to-face education and ongoing support to patients and caregivers, which focusses primarily on building selfconfidence in setting up and administering enteral feeds whilst also promoting selfreliance to troubleshoot any problems that may occur. I continue to be inspired by the remarkable
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way in which families naturally cope (once home from hospital) and their ability to juggle so many balls in the air with the number one priority always being that of their loved one. It’s important to note that enteral feeding may only play a small part in the child’s medical journey (particularly if the child has complex care requirements) however, enteral feeding remains a crucial component for the child’s wellbeing to ensure all nutritional goals are being met to promote the best clinical outcomes for the child. So it is very important to get it right. The method of feeding chosen is normally determined by the managing healthcare professional and takes into account the safest way in which a feed can be delivered. This decision is based on a holistic review that includes the ability to meet all nutritional goals daily and at set times that are tailored to best suit the child/caregiver practically. There are two methods of tube feeding:
Pump feeding Feeding continuously or intermittently through a pump to deliver a set rate and volume of feed.
Bolus feeding Feed is given in smaller volumes (e.g. 100mls) one at a time, several times
throughout the day (e.g. four times per day) with the use of a pump, gravity set or a syringe. The child and/or caregiver should always remain central to all decision making when gearing up for the discharge home as the practicalities of home life routines must also be considered particularly when other siblings are present. As a caregiver receiving training specific to the nutritional needs of your child, it is important that during this time you ask as many questions as you can. This will help provide answers to any uncertainties you may have and also assists nurses in determining the level of support you can expect once home. Ensure that you have hands on practical training with the training equipment specific to the method of feeding chosen for your child. This may include the following: • setting up and programming a feeding pump • attaching a feeding set • attaching adapters • using a syringe • attaching an extension set • and becoming familiar with the feeding tube itself
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It’s important that you feel confident in the operating of the device whilst knowing how to connect the various components together before discharging from hospital. A way in which this can also be achieved is by practicing under the watchful eye of ward nurses who will support you in consolidating your learning following your initial training. The nurses will talk you through each step, so you can confidently set up and administer the next feed once due. Training should also incorporate education on how to safely care for the feeding tube daily to prevent complications occurring. Your training is intended to support a smooth and seamless transition from hospital whilst adjusting to brand new routines as you settle back in to family life once home. But it does not stop there. Often once you’ve had time to digest the information and training you will have lots of questions afterwards so it’s important to jot those questions down to ensure all your queries are being addressed. With the right amount of support available, caregivers can feel more confident in their own ability to safely tube feed their child once home. It is reassuring to know that help from nurses who deal everyday with these types of queries are only a phone call away and are central to ensuring your experience remains a positive one through this big transition home. If you require further information about training support in your area then please contact the Nutricia Clinical Careline on 1800 060 051.
TYPES OF FEEDING TUBE Your health care professional and dietician will help you decide on the right feeding tube solution according to your child’s needs.
NASOGASTRIC TUBE
GASTROSTOMY TUBE
This is a tube that goes down into the stomach via the nostril. Surgery is usually not required for placement of this tube. Most often considered for short-term use.
Also known as Percutaneous endoscopic gastrostomy (PEG), this tube is placed directly into the stomach via an opening in the abdomen, known as a stoma. Initially the tube hangs outside the body but in many cases once the stoma has healed a flatter replacement tube can be used (known as a button).
(NG TUBE)
NASOJEJUNAL TUBE (NJ TUBE)
Like the NG tube, the insertion point is through the nostril but this tube reaches to the jejunum – the middle section of the small intestine.
NASODUODENAL TUBE (ND TUBE)
Inserted through the nostril this tube reaches the duodenum – the first part of the small intestine.
(G TUBE)
GASTROJEJUNAL TUBE (GJ TUBE) Similar to the G tube, most have two ports – one accessing the stomach directly and the other extending into the small intestine.
JEJUNAL TUBE (J TUBE)
this is placed directly in the middle part of the small intestine.
Bringing fun, practical and unique products to children with special needs in Australia.
Australia’s newest online disability store has just launched with a great range of products including 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.
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food WAYS TO MAKE
! fun Children with disability can have difficulties with food for so many reasons from physical through to sensory, making mealtimes a stress point for many families. Besides the more serious business of feeding therapy, enteral feeding and the ins and outs of nutrition covered elsewhere in the issue here are a few light-hearted ideas for making food fun for your child.
CHANGE HOW A MEAL IS SERVED You could focus on colour when serving a meal – so many children love rainbows and a bright platter of foods can be highly appealing. A range of different coloured foods will also help introduce a variety of nutrients into your child’s diet. Why not make a game out of seeing who can be the first to eat a whole rainbow of colours within a week. Another idea for experimenting with colour is to use food colouring to change up boring looking pasta. Rainbow pasta, anyone? Plate selection is another way you can make a difference at the table. There are a number of fun options on the market, even ones that make finishing a meal a game.
INCORPORATE THEIR OBSESSIONS Think about how you can work your child’s passions into mealtimes. This can be as simple as informing plate choice – thanks to marketing tie-ins there are an endless choice of TV and movie related options available. Or if your child has an interest in a particular country – you can go into detail about where different foods can be found. Perhaps your child loves a specific shape such as hearts or stars? Time to put that cooker cutter to work again.
If your child hates it when foods touch each other, try some plates with dividers. Or how about a plate that helps you make some funny faces? Even without the dedicated face plates you can get creative and make shapes and objects with food; the internet is awash with some great ideas. We love these spreads on toast and cute way of presenting an omelette. You can even let your child experiment with fruit and veg themselves and make their own creations. Cooker cutters don’t have to just be used for cookies – use them to press out shapes in a variety of food including toast, sandwiches and pancakes.
INVOLVE YOUR CHILD Food shopping with kids isn’t high on the list of any parent’s favourite things but if you can involve your child in the selection of your groceries, this may help them be more engaged in what they are eating. They could help you write the shopping list or perhaps they can choose one or two of the week’s meals. Think about simple ways they can help prep the meal with you in the kitchen too – stirring, pressing buttons, passing ingredients, measuring and cleaning up are just a few ideas. Playing ‘restaurants’ could motivate some children too. Choose who gets to be the waiter and maybe make up a little menu. You could also make a fun game of naming a meal or even change the name of ingredients to something fun – your child might be more inclined to eat broccoli (one can dream!) if you call it ‘baby trees’ for example. Or perhaps a green smoothie could be ‘monster juice’ - the possibilities are endless. Meals that allow children to serve themselves (if they are able) are also a great idea as they will feel that they have more control over what is on their plate.
GET OUTSIDE While children need to learn to eat at the table it won’t hurt to change things up sometimes. If the weather is good, perhaps you can take a picnic blanket into the yard or head to the local park. Or as a special treat you could spread a large washable cloth on the floor of the living room. Perhaps this could be a reward for a week of good eating or trying new foods.
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. . . e m i t l a e m
O nce upon a
PERSONALISED BENTO BOX
Leakproof, dishwasher safe, BPA free and personalised! What a way to make school lunches fun. In a clever design, the Bento Box offers compartments in a handy tray that can be removed for cleaning.
KIDDIES FOOD KUTTER AND SAFETY FOOD PEELER
www.stuckonyou.com.au
The original and best kids’ knife is suitable for all skill levels. Getting your child involved in meal preparation will help fine motor skills, independence and confidence. Although we recommend adult supervision this knife is stainless steel with rounded teeth and no sharp edges. The safety knife that won’t cut fingers! www.kiddiesfoodcutter.com.au
CONSTRUCTIVE EATING CUTLERY SET Who needs to play with their food, literally? Bulldoze your way through dinner with this quirky set. www.sensorytools.net
POPSTICKS CHOPSTICKS Here is a different take on your average chopsticks. Add some fun and motivation to the dinner table.
ARK Z VIBE SPOON This spoon has a smooth vibration to gently ‘wake up’ the mouth. It increases awareness and provides oral motor stimulation to the lips, tongue, cheeks and jaw. www.skillbuilders.com.au
www.skillbuilders.com.au
EASIE EATERS CURVED UTENSILS Angled utensils will promote greater success with hand-tomouth feeding. Designed by an OT, they feature a built up grip and removable protective shields to prevent the utensil entering too far into the mouth. www.thetherapystore.com.au
ARK BEAR BOTTLE
Designed to keep food on the plate! This will prevent food being pushed off, keeping mealtime less messy. The concave wall will guide food onto the utensil.
This might be a fun and friendly way to make drinking easier for your child. Featuring a unique valve that controls the direction of fluid, liquid flows up into the straw and does not flow back down. Highly recommended for those that aspirate or have a weak suck.
www.performancehealth.com
www.mydiffability.com.au
MY PLATE-MATE FOOD GUARD
SAINT ROMAIN ERGO 3D SILICONE SPOON A bendable spoon on which the handle maintains it’s position once it has been bent into the required shape. This is also suitable for users with tonic bite reflex. www.avantinnovations.com.au
SIP N SOUND STRAW These straws burst to life and make sounds as liquid passes through. Kids will love to hear these sounds and best of all it will encourage fluid intake. Not suitable for three and under and does contain a button battery. www.sensorykidsoutlet.com.au
FRED DINNER DJ PLATE SET Who says you shouldn’t play with your food? This fun set will encourage kids to love what they eat. Made from melamine, it is dishwasher safe but not recommended for the microwave. www.amazon.com.au
SILLY BILLYZ YOUTH PROTECTOR BIB This super long front protects clothing while eating. Suitable for most sizes, it has a triple snap neck closure. www.bpmchildcare.com.au
EZPZ HAPPY MAT Built to last, this all-in-one placemat/ plate will capture kids messes, keep them in a positive mood for mealtime and caters to nutrition by offering separate compartments. Suctioned to smooth surfaces this will ensure no more tipped plates! www.childrensdisabilityproducts.com.au
mymealtime by
• adaptive cutlery • technical tableware • independent dining aids
www.avantinnovations.com.au Phone: +61 2 8315 2834
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PRODUCT REVIEW
STANDERS
TYPE M = P = S = Mu =
Standers come in all shapes and sizes, from prone to upright, right through to 180 degrees of movement and suitable to a range of ages, sizes and needs.
Age, weight and heights listed relate to the user of the stander.
This issue we take a look at all things standers and review the latest options on the market.
APP MULTISENSORIAL Handi Rehab
TYPE
M
This stander revolutionises standing frames by transforming audio/video into vibration, which spreads through the whole structure allowing the child to experience a multisensory stimulus. This motivates the child to be in the stander for longer periods.
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
2-10yrs
Up to 55kg
75-140cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
Upright Static Stander
60-68cm
66-73cm
CAT 1
TYPE
PME Group
P
The CAT I Prone Stander is designed to help children adopt the correct upright standing position – upholstered in breathable and hypoallergenic fabrics, the stander offers optimal support and easy adjustment.
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
3-7yrs
Up to 25kg
75-100cm
BANTAM
BUDDY POSTURA
By maintaining a sustained, weight bearing stretch throughout the standing session, range of motion can increase over time for many children.
4-in-1 standing solution providing secure postural support at a wide range of inclines. Large growth range and easy adjustments mean the Buddy Postura will cover a wide range of children in a single unit.
PME Group
Dejay Medical
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
XS: 2- 5yrs S: 3-12yrs M: 6-small adult
XS: Up to 23kg S: Up to 45kg M: Up to 91kg
XS: 71-102cm S: 91-137cm M: 122-168cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
Supine: up to 90 degrees
XS: 62cm S: 62cm M: 62cm
XS: 93cm S: 93cm M: 113cm
CAT II INVENTO PME Group
TYPE
P&S
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
0-12yrs
Up to 50kg
70-140cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
300 degrees
50cm
58cm
DUO STANDER (DONDOLINO)
TYPE
M&P
The Duo is a bright, fun tilting prone – upright stander that has been designed to help assist a child’s standing abilities.
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
4-10yrs
Size 1: 35kg Size 2: 45kg
Size 1: 70-100cm Size 2: 80-130cm
FRAME WIDTH
FRAME LENGTH
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
25-85 degrees
54cm
100cm
0-90 degrees
Size 1 & 2: 60cm
Size 1 & 2: 81cm
WINTER 2018
TYPE
M, P, S & Mu
Handi Rehab, PME Group
CAT II Invento enables an individual approach to standing – from prone to supine standing – challenging and enhancing the development of children.
ANGLE RANGE
16
Mobile Prone Supine Multi
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
2-10yrs
Size 1: 35kg Size 2: 45kg Size 3: 55kg
Size 1: 75-94cm Size 2: 90-115cm Size 3: 110-140cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
Size 1: 0-19 deg. Size 2: 0-14 deg. Size 3: 0-11 deg.
Size 1: 63cm Size 2: 68cm Size 3: 72cm
Size 1: 67cm Size 2: 80cm Size 3: 87cm
www.sourcekids.com.au
DYNAMIC STANDING FRAME
TYPE
upright only
PME Group
The Dynamic Standing Frames (DSF) are minimal support devices, designed to enable limited movement in all directions to enhance the users standing and balance.
EASYSTAND BANTAM Dejay Medical
TYPE
M, S & Mu
The only range of sit to stand standers that can combine the option of supine positioning to create infinite positioning possibilities from 90-90 sitting, fully vertical standing, full supine lying and anywhere in between.
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
Size 1: 3-5yrs Size 2: 5-7yrs Size 3: 7-12yrs
Up to 60kg each size
Size 1: 45-60cm Size 2: 63-83cm Size 3: 80-105cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
Upright only
Size 1 & 2: 43cm Size 3: 59cm
Size 1 & 2: 59cm Size 3: 79cm
EASYSTAND GLIDER
TYPE
Dejay Medical
Mu
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
1-18yrs
Up to 91kg
71-168cm
5yrs-Adult
Up to 159kg
122-208cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
0-180 degrees
62cm
93cm
0-90 degrees
67cm
85cm
EASYSTAND STRAPSTAND
TYPE
M & Mu
EASYSTAND ZING 1&2 The Zing line of multi and single position standers were designed to fit the widest range of children and accommodate positioning challenges. The Zing line features independent leg abduction up to 30 degrees on each model. AGE RANGE
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
6yrs-Adult
Up to 127kg
122-188cm
10yrs-Adult
Up to 159kg
152-195cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
0-90 degrees
67cm
104cm
180 degrees
71cm
71cm
TYPE
Sunrise Medical
M
The Leckey Freestander positioning standing system offers comfort through adjustable supports to cater to your child’s unique postural positioning needs in the classroom, therapy room or at home.
TYPE
PME Group, Sunrise Medical
M, P & S
WEIGHT RANGE
HEIGHT RANGE
1-18yrs
0-90kg
53-143cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
0 degrees
65-75 cm
65-75 cm
WEIGHT RANGE
HEIGHT RANGE
Zing 1: 0-6yrs Zing 1: Up to 32kg Zing 2: 4-15yrs Zing 2: Up to 70kg
Zing 1: Up to 112cm Zing 2: 102-152cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
Zing 1 & 2: 0-110 degrees
Zing 1: 51cm Zing 2: 68cm
Zing 1: 71cm Zing 2: 101cm
JENX MONKEY STANDER
TYPE
M&P
Medifab , PME Group, Special Needs Solutions, Step Ahead Paediatrics
The Horizon stander is a robust durable 3-in-1 stander which can be positioned into 3 different positions, prone, supine and upright and is available in 3 different sizes.
AGE RANGE
www.sourcekids.com.au
HORIZON
TYPE
M, P, S & Mu
Dejay Medical, PME Group
The Easystand StrapStand has the most innovative lift design of any strap-style stander. Using dual hinged lifting arms, the StrapStand gently raises a user vertically then gradually pulls them to the standing position reducing knee pressure.
FREESTANDER
TYPE
M, S & Mu
Dejay Medical The Evolv enables full extension at the hips and knees for those with limited ROM, sit to stand provides an opportunity to stand in a partial weightbearing position and potentially progress to full extension over time.
Dejay Medical
The Dynamic Standing Frames (DSF) are minimal support devices, designed to enable limited movement in all directions to enhance the users standing and balance.
EASYSTAND EVOLV
Specifically designed to appeal to young children and their families, the Jenx Monkey is an ideal fun and gentle introduction to standing.
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
Size 1: 4-10yrs Size 2: 9-18yrs Size 3: 14yrs-Adult
Size 1: 50kg Size 2: 80kg Size 3: 100kg
Size 1: 100-140cm Size 2: 140-180cm Size 3: 155-180cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
0-90 degrees
Size 1: 58cm Size 2 & 3: 64cm
Size 1: 113cm Size 2 & 3: 128cm
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
9mth-4yrs
0 to 25kg
51 to 75cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
20-90 degrees
57.5cm
88cm
WINTER 2018
17
JENX MULTISTANDER Medifab, Special Needs Solutions, Step Ahead Paediatrics
TYPE
M, P, S & Mu
The Multistander offers an unrivalled amount of adjustment for height and width in prone, supine, or upright, making it the perfect choice for growing children or multi-user environments. WEIGHT RANGE
HEIGHT RANGE
Size 1: 9mth-6yrs Size 2: 3-13yrs
Size 1: 0 -35kg Size 2: 0-60kg
Size 1: 116cm Size 2: 175cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
Size 1: 90-10 deg. Size 2: 10-90 deg
TYPE
M&P
Medifab, Special Needs Solutions The Prone Stander aims to make standing enjoyable and practical for your child, offering a continuous range of angles to achieve the unique optimum position for each child.
AGE RANGE
(10 to 90 for prone configuration)
JENX PRONE STANDER
Size 1: 56.5cm Size 2: 65cm
Size 1: 71cm Size 2: 99.5cm
(powered base), 0-80 (manual base)
JENX SUPINE STANDER
TYPE
M&S
Medifab , PME Group, Special Needs Solutions, Step Ahead Paediatrics
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
Size 1: 3-7yrs Size 2: 6-14yrs
Size 1: 0-55kg Size 2: 0-70kg
Size 1: 66-100cm Size 2: 82-127cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
Size 1: 40 degrees to upright Size 2: 40 degrees to upright
Size 1: 65cm Size 2: 65cm
Size 1: 90cm Size 2: 99.5cm
MINI STANDY
TYPE
Handi Rehab, Special Needs Solutions
M
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
Size 1: 9mth-4yrs Size 2: 3-11yrs Size 3: 10-18yrs
Size 1: 0-25kg Size 2: 0-50kg Size 3: 0-100kg
Size 1: 105.5cm Size 2: 145.5cm Size 3: 190cm
TYPE
Active Rehab, Medifab, PME Group, Special Needs Solutions, Step Ahead Paediatrics
S
A versatile standing system that accommodates abducted or neutral leg positioning. Leg length discrepancy is easily accommodated by the individual control for knee and foot positioning. With an extensive range of accessories, Standz accommodates a range of postural requirements. AGE RANGE
WEIGHT RANGE
1-9yrs
Max 45kg
ANGLE RANGE
FRAME WIDTH
HEIGHT RANGE
FRAME LENGTH
5-90 degrees
MYGO
TYPE
PME Group, Sunrise Medical
M, P & S
1 stander, 2 sizes, 3 configurations, 4 colours – the Leckey Mygo Stander encourages natural standing posture and improved function.
This is a vertical stander that supports the child without forcing them into a position. It has a reclinable tray and allows the user to interact positively with their environment.
The Supine Stander makes standing practical with an easyto-adjust system that offers a continuous range of angles to allow joints to be supported but mobile – training balance and encouraging development.
JENX STANDZ
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
2-10yrs
Up to 55kg
75-150cm
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
4-14yrs
Size 1: Up to 50kg Size 2: Up to 60kg
Size 1: 108-145cm Size 2: 135-170cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
All sizes: Upright to 80 degrees
Size 1: 57.5cm Size 2 & 3: 65cm
Size 1: 66cm Size 2 & 3: 99.5cm
Upright vertical stander
58-65cm
60-80cm
0 - 80 degrees
Size 1: 63cm Size 2: 65cm
Size 1: 97cm Size 2: 113cm
PRONESTANDER
TYPE
Sunrise Medical
M&P
Be prone for success with the Leckey Pronestander! Available in 3 sizes that accommodate for large growth ranges and individually adjustable supports to give the best postural experience.
TYPE
M, P & S
The R82 Caribou supports the whole body with a large range of support options, without any gaps that may make the child feel unsecure.
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
1-18yrs
0-90kg
115-185cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
45-85 degrees
60-70cm
82-127cm
18
R82 CARIBOU
R82 Australia
WINTER 2018
R82 GAZELLE
TYPE
R82 Australia
M, P & S
Standing in abduction in the Gazelle standing frame has been shown to reduce the hip migration percentage in children with cerebral palsy who are at risk of hip dislocation.
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
1yr-Adult
Up to 100kg
70-184cm
1-14yrs
Up to 80kg
70-170cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
0-87 degrees
Size 1: 51cm Size 4: 75cm
Size 1: 75cm Size 4: 111cm
15-90 degrees
Size 1: 48cm Size 3: 65cm
Size 1: 76cm Size 3: 99cm
www.sourcekids.com.au
R82 MEERKAT
TYPE
R82 Australia
M&P
The Meerkat is a simple upright standing frame with adjustable support for feet, knees, pelvis and chest. It can be used with or without the rocker base, which enables development of dynamic posture control.
R82 RABBIT MOBILE STANDER
R82 TOUCAN
TYPE
R82 Australia, Special Needs Solutions
WEIGHT RANGE
HEIGHT RANGE
1yr-Adult
Up to 90kg
70-180cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
Upright stander
Size 1: 53cm Size 3: 78cm
Size 1: 64cm Size 3: 86cm
RIFTON MOBILE (RIFTON DYNAMIC STANDER)
TYPE
M
PME Group, Special Needs Solutions Versatile and easy to manoeuvre – designed to help children and adolescents achieve the greatest possible mobility and independence.
M&P
This standing frame is prepared for all kinds of accessories and allows the child feel the benefits of standing, including bone and muscle strengthening.
The R82 Rabbit stander is a good option for children and adults who have good arm and hand control to be able to wheel themselves around in a standing position.
AGE RANGE
TYPE
R82 Australia, Special Needs Solutions
M&S
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
1-18yrs
Size 1: Up to 40kg Size 2: Up to 50kg Size 3: Up to 60kg Size 4: Up to 70kg
Size 1: 114.5-123cm Size 2: 132-140cm Size 3: 122-142.5cm Size 4: 142.5-162.5cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
0-30 degrees
Size 1: 57cm Size 2: 67.5cm Size 3: 68.5cm Size 4: 69cm
Size 1: 51.5cm Size 2 & 3: 74.3cm Size 4: 84.5cm
RIFTON TRAM AND LOW BASE TRAM
Special Needs Solutions
TYPE
M
This TRAM has multiple uses, e.g. patient lifter, walking aid and stander. So many accessories to assist in easy transfers and makes therapy easier for both child and parent/carer.
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
1-18yrs
Size 1: Up to 30kg Size 2: Up to 40kg Size 3: Up to 50kg Size 4: Up to 60kg Size 5: Up to 70kg
Size 1: 34-70cm Size 2: 54-90cm Size 3: 74-110cm Size 4: 91-121cm Size 5: 110-141cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
0-30 degrees
Size 1: 56cm Size 2 & 3: 63cm Size 4 & 5: 70cm
Size 1: 75cm Size 2 & 3: 88cm Size 4 & 5: 110cm
SQUIGGLES
TYPE
PME Group, Sunrise Medical
M, P & S
Lightweight and robust stander support frame can be easily transferred from one chassis to another – means that kids can benefit from standing therapy in any environment.
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
Children to Adolescent years
Mini & S: 23kg M: 54kg L: 79kg
Mini: 64-81cm S: 76-102cm M: 94-132cm L: 122-165cm
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
AGE RANGE
WEIGHT RANGE
HEIGHT RANGE
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
N/A
Up to 158kg
193cm
1-5yrs
Up to 22kg
75-111cm
Upright
Mini & S: 65cm M: 74cm L: 85cm
Mini & S: 64cm M: 81cm L: 95cm
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
ANGLE RANGE
FRAME WIDTH
FRAME LENGTH
N/A
70-117cm
116cm
90-160 degrees
55cm
82cm
WEBSITES OF FEATURED STANDERS Active Rehab
Medifab
Special Needs Solutions
Dejay Medical
PME Group
Step Ahead Paediatrics
Handi Rehab
R82
Sunrise Medical
activerehab.net.au
www.dejay.com.au
www.handirehab.com.au
www.sourcekids.com.au
www.medifab.com.au
www.pmegroup.com.au
www.r82.com.au
www.specialneedssolutions.com.au
www.stepaheadpaediatrics.com.au
www.sunrisemedical.com.au
WINTER 2018
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MFB0150 Sourcekids Jenx Standz 210x148 FA.indd 1
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WINTER 2018
17/04/18 4:09 PM
www.sourcekids.com.au
STANDING TALL! We are always looking for products that provide functional mobility for children with special needs. Our range of paediatric standers are no exception. They offer ground breaking design and the latest technology with options for safe, efficient postural management while maximising participation in daily activities with family and friends.
www.pmegroup.com.au
PH: 1300 131 884 www.facebook.com/pme4thosespecial2u SourceKids_VarietyatWorkAd2018WinterIssue_PrintReady.pdf 1 8/05/2018 3:02:31 PM
PME-Source-Kids-Ad-0418-v01.indd 1
3/04/2018 4:06 pm
Variety@Work C
M
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CM
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CMY
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Variety - the Children’s Charity hosts lots of exciting events throughout the year so kids can have some fun, meet new people and try something new. We invite schools and organisations to sign up online variety.org.au/vic/programs/varietywork
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WINTER 2018
www.sourcekids.com.au
DID YOU KNOW...
MAKING LIFE A TAD EASIER FOR 40 YEARS BY IAN BEATON
Technology for Ageing and Disability SA (formerly Technical Aid to the Disabled SA) or TADSA is a unique South Australian charity that has been making life easier for people living with disability for 40 years.
help make things like parallel bars for kids who need them, it's just amazing. To have a kid that's not meant to walk and probably wouldn't talk to be up and standing is pretty special.”
Since its inception in 1976, hundreds of volunteers have designed and built or modified thousands of devices that are not commercially available to improve the quality of life of clients.
Jazzy's mum Sharon came to TADSA with a problem – Jazzy can't spend a long time in her wheelchair, as it puts too much pressure on her spine. When she's not in her wheelchair, she's on the floor. Sharon suggested the bouncer and two TADSA volunteers built it. One made the metal frame, which incorporates wheels so Jazzy can be moved from room to room – even outside. The other volunteer shaped the material and attached it so it supported Jazzy in the most comfortable way.
Many of the projects built over those 40 years have been for children. “This is an amazing organisation. I would recommend that you get in contact with them if you or someone you love needs a little bit of extra help to make their life easier with the aid of some equipment. They really do fantastic work. Thank you TADSA”. These are the words of Sam, the father of Jake. “He was born totally healthy and he ended up just getting very sick right after he was born so that's why he has cerebral palsy.” said Sam. To help Jake with his walking, TADSA made some “mini” parallel bars. A feature of the bars is that they can slide together and be put against a wall taking up very little room. Sam continues “Since he's had his parallel bars, he's been able to walk up and down them and that's helped him walk on his walker as well, so he's gaining more independence because of them.” TADSA also made some bars to fit on to his parents’ treadmill making it safer for Jake to use. “I didn't actually realise there was a charity out there like TADSA that did stuff like this. People donating their time and their skills to
Another project TADSA volunteers recently completed was a bouncer, similar to a baby bouncer but much bigger.
Sharon said "It's a wonderful thing isn't it. Jazzy is normally on the floor and to be able to get her off the floor and in a position that enables her to be more inclusive is just so wonderful. Also, the bouncing motion for Jazzy is very soothing and she is so comfortable that she's gone off to sleep in it numerous times. Thank you so much, it's just so appreciated." Apart from the devices it creates, TADSA also has the freedom wheels modified bike program for children with disabilities. TADSA volunteers take regular bikes and fit them with prefabricated accessories or invent accessories, which will allow a child to ride a bike usually for the first time. TADSA volunteers have invented rear steering systems, modified handle bars and pedaling systems. There is a TAD or TAD-like organisation in every state and the ACT and you can contact your nearest TAD on 1300 663 243.
HERE’S THE STORY OF HARRY’S TRIKE WRITTEN BY HIS DAD, BEN. “Our project was to adapt a trike to accommodate our four-yearold son Harry who has dyskinetic cerebral palsy. He has a wicked back extension that can do a bit of damage both to himself and others and to keep him on a bike in the correct position was quite a challenge. The trike was fitted with hip straps, a chest harness and head rest to accommodate his back extension and keep his posture correct, straps were fitted to keep his feet on the pedals and wrist straps were crafted to keep Harry’s hands on the handle bars. The volunteer that accepted the challenge of our project was an awesome bloke, so passionate about the project. He met us at our home for the measurements and the whole process took only 2-3 weeks to complete from measuring, to fabricating, to fitting and delivery of the bike. Harry absolutely loves riding his bike with his brother, he is so proud when he is riding his bike and every time we go past it he gestures to it to go for another ride. I’m so thankful that we found TADSA and would highly recommend them to anyone looking for specialised equipment and modifications”.
www.sourcekids.com.au
WINTER 2018
23
Where comfort meets the ultimate in patented Modifier Technology protection to ensure your daughter gets the most out of her day and nothing is in her way!! Modibodi leakproof underwear and swimwear is your daughter’s new best friend, a range that replaces disposable hygiene and offers superior protection for light bladder leaks, menstruation, odour and discharge.
“I bought these for my 12 year old daughter so that I can relax in the knowledge that if her period comes whilst she’s at school she’ll be protected and will have nothing to worry about. She loves how they fit and feel. I am really happy with these fantastic undies! I plan to buy lots more!” - Elisa
Modibodi is perfect for everyday activities such as dance, school, sports and sleep.
We offer a 30 day risk free trial for all new customers. Purchase Modibodi risk free at modibodi.com
A perfect night’s sleep with the Jenx Dreama ...the ultimate sleep positioning system “Testing the Dreama™ with our child has given the whole family improved sleep and a more normal, active lifestyle than before…”
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WINTER 2018
Contact Step Ahead Paediatrics to arrange a trial. Phone 1300 953 935 www.stepaheadpaediatrics.com.au
www.sourcekids.com.au
WHAT'S ON CALENDAR
winter
JUNE
JULY
1-30 CMV Awareness Month
1-31 Fragile X Awareness Month
www.cmv.org.au
15-17 Screenability 2018 @ Sydney Film Festival
www.sff.org.au
17 Sensory movie screenings (Sherlock Gnomes, Incredibles 2) Events Cinemas & Grand cinemas nationwide
18-24 World Continence Week www.continence.org.au
fragilex.org.au
2 Corpus Callosum Awareness Day www.ausdocc.org.au
10 Wilde Creatures AUSLAN interpreted performance
19 Diary of a Wombat relaxed performance www.monkeybaa.com.au/ shows/diary-of-a-wombat-3/
20 Hunting of the Snark AUSLAN interpreted performance www.sydneyoperahouse. com/events.html
20 National Pyjama Day www.nationalpyjamaday.com
www.sydneyoperahouse. com/events.html
14 Wilde Creatures relaxed performance www.sydneyoperahouse. com/events.html
22 Hunting of the Snark relaxed performance www.sydneyoperahouse. com/events.html
29
Red Nose Day
rednoseday.com.au
29 Sensory movie session – Early Man
(contact individual cinemas)
30 International Day of Friendship www.un.org/en/events/ friendshipday
AUGUST 5-11 EOS Awareness Week www.eosaware.com/
13 Neuro-rehabilitation Awareness Day www.ain-rehab.org.au
www.sourcekids.com.au
WINTER 2018
25
FAMILY PROFILE
Wogas MEET THE
FAMILY
SINCE LOSING GEORGIA, THERE ARE NOW THREE PEOPLE LEFT IN OUR FAMILY. MY HUSBAND GARY, SON AND GEORGIA’S BIG BROTHER, ANDREW AND MYSELF (KELLIE). WE ALSO HAVE TWO DOGS, ONE OF WHICH USED TO CURL UP ON GEORGIA’S LAP OR SIT IN HER WHEELCHAIR WITH HER.
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WHERE DO YOU LIVE?: We live in Malabar, in the eastern suburbs of Sydney.
WHAT WAS YOUR CHILD’S DIAGNOSIS AND HOW DID IT AFFECT THEM? When she was born, Georgia was perfect. Her diagnosis came in stages; she was first diagnosed with epilepsy at 10 weeks of age after starting to have small seizures. When she was six months, an MRI diagnosed her with Pachygyria, a congenital malformation meaning that a couple of areas in her brain were ‘thick’, instead of appearing convoluted. This brain problem originally started her seizures. She was then also diagnosed with a global developmental delay as she basically wasn’t
www.sourcekids.com.au
WE BASICALLY GOT THROUGH LIFE WITH OUR MEDICAL AND RESPITE TEAMS, A FEW CLOSE FRIENDS AND MY MUM. WHAT LED TO THE DIAGNOSIS? Georgia’s first diagnosis of epilepsy came about after she started to have small seizures. One day I put her on the change table and her right arm started to twitch. At first I thought it was the way she was laying, so I repositioned her. About an hour later, I had her on my lap. Her arm started twitching again, and so did her right leg. It probably only lasted 30 seconds, but I knew it wasn’t right. I got out all the baby books and looked up convulsions. I rang the obstetrician, but couldn’t get into see him for two days, even after explaining what was happening. So I sat and watched her. About an hour later it happened again, twitching in her arm and this time both legs, so I took her to the Sydney Children’s Hospital emergency. Whilst she was being examined by a doctor, both her arms went out in front of her and started to twitch again. So a neurologist was called. Georgia was admitted to hospital for blood tests and an EEG. Results showed she had epilepsy. And that was the beginning of a lifelong relationship with the hospital.
WHAT THERAPIES DID YOUR CHILD DO? DO YOU HAVE ANY TIPS/TRICKS FOR FITTING THERAPY INTO YOUR LIFE? Georgia started to see a physical therapist, occupational therapist and speech therapist to help with feeding. Physical therapy was constant, always moving her, stretching, rolling, putting her in standing frames etc. Even positioning her in bed at night in a sleep system to keep her straight.
advancing. She failed to develop muscle tone, speech and co-ordination. She wasn’t reaching any of her baby milestones. Around the age of three, it was clear that Georgia had more than a developmental delay. She was not walking or talking and could not sit up. Her seizures were still uncontrolled and there was no co-ordination for her to pick up toys or hold onto anything. She was diagnosed with severe spastic quadriplegic cerebral palsy. Due to the severity of her CP and developmental delay, Georgia was nonverbal and didn’t have much awareness or understanding of what was going on around her, so we couldn’t explain her health problems to her. I suppose it’s lucky in a way, she didn’t know any better and she was always a happy, content child.
www.sourcekids.com.au
I think it can be hard for parents to come to terms with this extra responsibility that comes with a child with special needs and make it fit in to an already busy family life. Suddenly life has changed dramatically. We struggle to make everything fit, and we put a lot of pressure on ourselves. There’s no magic trick to make it all work, you just take a deep breath and get it done. Housework can wait. Communicate with your partner and family, and ask for help if you need it. Teach your family how to help care for your child, so they can be hands on and give you a break. I think the saying ‘it takes a village to raise a child’ rings very true in the disability world.
DID YOUR CHILD ATTEND SCHOOL? HOW WAS SHE SUPPORTED? Georgia went to St George Special School, a school for moderate to severe physical and multiple disabilities. She was transported
to and from school every day and the teachers were amazing. They always showed great care with the children, making sure they were happy and comfortable. All the teachers and aides were experienced in special needs education. Although most of the kids at school weren’t able to communicate or learn much, every opportunity was given to each and every one of them. The teachers cared about their class very much, as most kids were medically fragile. They were more like friends than teachers.
HOW WERE YOU SUPPORTED IN THE COMMUNITY? There wasn’t really a lot of community support. We basically got through life with our medical and respite teams, a few close friends and my mum. When Georgia got too heavy to carry, we decided to have our vehicle modified for wheelchair access. I wrote letters to local clubs and some businesses. We were lucky to get quite a bit of financial support, enough to get the car done. I also worked at a pub where one of the regulars, who had discovered my story, did a huge raffle for Georgia. Some of the boys even came up and just gave me money for Georgia. It was overwhelming and heart-warming. We also received help from the local Lions club and the Variety Club that assist families with disabilities. Unfortunately, there wasn’t any personal
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LOOK FOR THE POSITIVES IN EVERY DAY. EVEN ON A BAD DAY, YOU CAN FIND SOMETHING GOOD… YOUR CHILD IS STILL HERE, STILL FIGHTING, AND SO ARE YOU. DON’T GIVE UP. support from our local community. To look back now, you just put it down to everyone being busy and having their own families. But I must say that there were a few instances when a complete stranger would offer me help when out in the shopping centres. That always restored my faith in humanity.
cried, I cursed the heavens (though I’m not religious I found someone to swear at), I lost sleep, I lost friends, I dealt with ignorant family members, but through it all, I gave Georgia everything she needed. I was always by her bedside. I find peace in knowing that. When you know you’ve given it your all, it helps.
WHAT ADVICE WOULD YOU SHARE WITH SOMEONE WHOSE CHILD HAS A LIFE LIMITING DIAGNOSIS?
When she was in hospital this last time, she was admitted on the Friday with pneumonia. It was a bad infection. Her health deteriorated during that Friday night and on the Saturday she hardly opened her eyes. She needed a lot of oxygen, was tachycardic, had high temperatures and was not responding to chest physio. I remember trying to get her to cough on the Saturday night after physio, but she’d lost the will to cough. The physio left.
Firstly, look after yourself. You can’t look after a sick child if you burn out. Take it one step at a time, don’t worry about the future, just worry about today. Read up on the diagnosis and make a list of any questions you have. Many times you get into an appointment and forget to ask something. Also look for a support group, especially with social media these days. It’s good to talk to other parents who are going through the same thing. You can learn a lot from other parents. Look for the positives in every day. Even on a bad day, you can find something good… your child is still here, still fighting, and so are you. Don’t give up. And at the end of that day, allow yourself some down time. Cry if you have to, have a drink, have a hot shower. Get some sleep, then get up to face another day. Remember you can do it! Just remember doctors are human, they can be wrong, even though we want to trust them with everything they say. After all, we put our child’s life in their hands. It’s hard when they give a life expectancy and parents are counting down the days or years waiting for the inevitable. Sometimes our kids can surprise the doctors and live longer. Georgia certainly did.
WHAT OR WHO HAS HELPED YOU AND YOUR FAMILY SINCE YOUR CHILD’S PASSING? I think it’s more about our feelings and our philosophy on life that has helped. I think looking back over the 19 years that we had with Georgia, I know we did everything humanly possible to care for her. We knew she was never going to grow old, but we feel lucky that we had her for as long as we did. Yes, it was hard work, I gave up a lot, I questioned myself at first, I asked why her, I
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Then I did something I never thought I would. I put my arms around her, kissed her beautiful face and told her it was okay to go. I said, I’m not going to try and make you cough anymore. It’s okay Georgie, you’ve fought long enough. I’ll love you forever and I’ll miss you, but if you can’t fight any longer, then I understand, you can give up. During that night, she continued to deteriorate, small amounts of morphine were given to help her high heart rate. Georgia held on for about another 10 hours, and passed on the Sunday morning. It was my 51st birthday. But that’s not a bad thing. Georgia gave me a birthday present. She gave me my life back. She gave her family the opportunity to do things that we hadn’t been able to do for years. That will always be a special bond that we share. And that also gives me peace. Now I must admit that there has been someone who has helped, and some of you may think I’m crazy, because not everyone believes in this, but I’ve seen an excellent medium. This lady told me things about Georgia and other family members that she could never have known. Through her, I know that Georgia is in a happy place, without cerebral palsy and seizures. My dad is looking after her, so she’s safe and well cared for. And she’s always with me. Seeing this lady was an incredible experience. There were some amazing messages relayed to me, and it has given me an inner peace that I never could have imagined after losing our daughter. I never thought I’d be so calm when talking about
Georgia. The first 12 months were extremely difficult. I felt like we didn’t just lose our child, we lost a lifestyle. We lost a routine. There was a huge hole in our lives and some big gaps to fill. But my husband and I have started a new life. We’re doing a bit of travelling and I’m sure Georgia is with us. I thank Georgia for teaching me to be strong.
We would never have managed without the following…
PRODUCTS WE LOVE: We couldn’t have managed without: a wheelchair accessible car, Invacare Solara wheelchair, Invacare adjustable bed, ParaMobility ceiling hoist, lifting slings, Promed patient lifter, Kangaroo portable feed pump, formula, Laerdal portable suction pump, shower trolley, water comfort chair from the Watercomfort Company, standing frame, Procair air mattress and Symmetry Sleep system. (We also definitely couldn’t have managed without Johnny Walker, Jim Beam and Cadbury).
PEOPLE (OR BUSINESSES) WE LOVE: Many people have helped us, Sydney Childrens Hospital, Neurologist Ian Andrews, Paediatricians Jonny Taitz, Louis Cheung and Mathew O’Meara, the nursing staff of C3South, Eastern Respite and Recreation, Sunnyfield, St George School, Jane Berry from The Spastic Centre (Cerebral Palsy Alliance), Ali Akbar and Andrea Escobar (two of our beautiful carers), Summer Hill Respite, Fari and Steve (our wonderful taxi drivers) and my Mum (the best babysitter, my biggest support).
www.sourcekids.com.au
Bringing together families, caregivers and medical experts onto a single, simple and secure mobile platform.
Founded by a community of ‘Do-Gooders’, passionate about making a difference to the Circle of Care, our app lets you Connect with others with shared lived experiences across the globe Extend the value of specialist therapies and interventions Securely capture, store and share purposeful health information Bring affordable tools and expertise to non-clinical environments
For Therapists and Subject Matter Experts Flexibility to deliver expertise anywhere, anytime Extend the value of individual goals and care plans Connect digitally for ease and convenience to families
Register your interest at www.carecircle.com.au
NDIS: THE GOOD AND THE BAD… Along with the hope of improved supports and funding for those with disability, the National Disability Insurance Scheme (NDIS) has brought with it many mixed opinions, experiences and outcomes. We asked our readers what they thought were the good and the bad points of the NDIS, here is what they said:
✔
THINGS THE NDIS ARE DOING WELL…
44% 38%
✘
Bringing the topic of disability more into the public eye. Claiming NDIS payments is simple.
38% 38% 36%
Control over plan management. The portal is easy to use. Choice of supports.
THINGS THE NDIS ARE NOT DOING WELL…
77%
Inconsistency in funding/plans between individuals.
56%
Lack of planning support.
70%
46%
67%
46%
Poor communication about what NDIS covers and planners are unskilled and/or untrained.
Difficult to get in touch with/long call waiting times.
Too much documentation and paperwork.
Language used is difficult to understand.
*Percentages quoted indicate total audience agreeing with statement – multiple responses were allowed.
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NDIS ROLLOUT AUSTRALIAN CAPITAL TERRITORY Rollout near completion, only new participants remaining.
If you haven’t kept up to date on the NDIS rollout across the country, here’s an update on where it’s all at. TASMANIA Currently available to: ages 4 to 14 years, 25 to 34 years COMING TO: July 1, 2018: ages 0-3 years, 35 to 49 years January 1, 2019: ages 50 to 64 years
NEW SOUTH WALES Rollout near completion, only new participants remaining.
NORTHERN TERRITORY Currently available in: East Arnhem, Barkly, Darwin Remote and Katherine COMING TO: July 1, 2018: Darwin Urban ad Central Australia regions
VICTORIA Currently available to: North East Melbourne, Central Highlands, Loddon, Inner Gippsland, Ovens Murray, Western District, Inner Eastern Melbourne, Outer Eastern Melbourne, Hume Moreland, Bayside Peninsula COMING TO: 1 September, 2018: Southern Melbourne 1 October, 2018: Brimbank Melton and Western Melbourne. 1 January, 2019: Goulburn, Mallee and Outer Gippsland.
QUEENSLAND Currently available in: Townsville (incl. Hinchinbrook, Burdekin, west to Mount Isa, and up to the gulf), Charter Towers, Palm Island, Isaac, Mackay, Whitsundays, Toowoomba and west to the borders, Ipswich, Lockyer, Scenic Rim, Somerset, Bundabert, Rockhampton, Gladstone and west to the borders COMING TO: July 1, 2018: Logan, Redlands, Cairns, Cassowary Coast, Tablelands, Croydon, Etheridge, Cape York, Torres Strait, Brisbane City, Fraser Coast, North Burnett, South Burnett, Cherbourg, Gold Coast and Hinterland January 1, 2019: Strathpine, Caboolture, Sunshine Coast, Noosa and Gympie
SOUTH AUSTRALIA Rollout near completion, only new participants remaining.
WESTERN AUSTRALIA People already taking part in the WA NDIS will transfer to the nationally-delivered NDIS in a phased approach as follows: April-July, 2018: North East Metro and inner Wheatbelt: Bassendean, Bayswater, Kalamunda, Mundaring, Swan, Chittering, Northam, Toodyay and York July-November, 2018: South Metro: Mandurah, Rockingham, Armadale, Murray and SerpentineJarrahdale August to October, 2018: Central South Metro: Cockburn and Kwinana September to December, 2018: Lower South West: Augusta-Margaret River, Boyup Brook, Bridgetown-Greenbushes, Busselton, Donnybrook-Balingup, Manjimup and Nannup October to December, 2018: Kimberley and Pilbara: Ashburton, Broome, Derby-West Kimberley, East Pilbara, Halls Creek, Port Hedland, Wyndham-East Kimberley and Karratha
WE HAVE
We specialise in fun and functional equipment for special needs children across Australia. • More than 150 products available for trial • A fully-qualified team passionate about helping children live, laugh and play • Our very own Product Consultant based in Townsville
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INDOOR PLAY TO SPEED UP THE DAY
BARNYARD ACTIVITY BOXES FROM MODERN TEACHING AIDS A fun and interactive development tool to help with counting, colour matching, sequencing and shape sorting.
RRP $69.95 www.teaching.com.au
WEPLAY TODDLER SENSORY PANELS FROM MODERN TEACHING AIDS A tactile set of panels to crawl on and build with.
RRP $499.93 www.teaching.com.au
FLOOR SURFER FROM KESCO We want to have a go on one of these! Developed by physiotherapists to ensure safe use by any child irrespective of motor skills level. Non-smudging hidden wheels, EVA foam padding and a tapered, raised front make up this surfer to develop motor skills and social interaction.
RRP $171.95 www.kesco.com.au
GONGE RIVER STONES SET OF 6 FROM EDUCATIONAL EXPERIENCE A great activity for indoor use, teaching children coordination. Each stone has three sides of varying angles and rubber buttons underneath to ensure non-slip stability.
RRP $104.39 www.edex.com.au
BALANCING CACTUS BUILDING GAME FROM SKILLBUILDERS Fine motor skills and a very bright, creative fun game! Helps to develop spacial awareness.
RRP $45.50 www.skillbuilders.com.au
THERABAND FROM MY DIFFABILITY A resistant elastic band allows children to gain proprioceptive input by pushing and bouncing against it. Have fun stretching and relaxing.
RRP from $4.60 www.mydiffability.com.au
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PLAYGROUND CAROUSEL CLASSIC FROM TRYTOP When you can’t get outside, bring the play equipment inside. This is great for every day exercise, for the whole family! Includes a ladder, fixed bars, gymnastic rings, rope and trapeze. With anti-slip steps and four colours to choose from.
RRP $299.20 www.trytop.com.au
PATTERNATION BY TIGER TRIBE What a great indoor activity for growing minds. Use the magnetic design board to arrange textured tiles in an array of colourful patterns. Inspired by the art of mosaic and patchwork design.
RRP $30.00 www.tigertribe.com.au
KICK BRICK FOAM BRICK PACK FROM KICK BRICK Simple construction toys to build walls and so much other fun. They are great for focused play, teamwork, sharing and listening.
RRP from $99.00 www.kickbrick.com.au
PARKER THE AUGMENTED REALITY BEAR BY SEEDLING Unlock a new way to play. Take a classic teddy bear and a mobile device. Parker activates augmented reality effects to create an interactive world of doctor play. No batteries, no wifi, no camera. Simply download the free Parker app and reimagine the world around you!
RRP $59.99 www.seedling.com
RAINBOW DESK BELLS FROM WINDMILL EDUCATIONAL TOYS AND EQUIPMENT Super easy to use, simply tap lightly to produce clear sounds. This set of eight can be used singularly or in a group.
RRP $49.95 www.windmill.net.au
HART ROLLERCOASTER FROM HART SPORT Challenge balance and coordination climbing up and down the wavy shapes. This is excellent for developing perceptual skills.
RRP $369.00 www.hartsport.com.au
www.sourcekids.com.au
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Freedom is choosing where you want to explore.
Wizzybug! Exciting and fun powered mobility option for young children Wizzybug is a powered vehicle for young children to experience early years in an adapted mobility device. It has a range of controls and seating adjustments and can be used with close adult supervision indoors and outdoors in accessible areas such as level gardens, playgrounds and parks enabling children to have a fun experience with their first wheels. Independent mobility has been proven to assist and encourage important developmental skills, along with giving your child the freedom to safely explore their environment.
- Suitable for children aged between 2-5 years (maximum weight 20kg) - A range of control options including joy stick, specialist switches and remote operation - Easily transportable – dismantles quickly - Has a standby charge of 2 weeks and will usually run for a few days based on moderate use - 8km range on full charge - Maximum speed of 2.9km/hr (speed can be limited)
Wizzybugs can be hired or purchased from CP Tech.
Call us on 1300 106 106 to find out more.
DISABILITY
EXPO BRISBANE CONVENTION & EXHIBITION CENTRE 6 - 7 JULY, 2018 MELBOURNE CONVENTION & EXHIBITION CENTRE 29 - 30 MARCH, 2019
DON'T MISS THESE MUST-ATTEND EXPOS! Source Kids will be hosting the first disability expo in Brisbane during July this year, followed by a second in Melbourne in early 2019, focused on children, youth and young adults – bringing together the latest products, services and technology, along with some incredible speakers under one roof for two days. Come along and find, test and talk with providers.
Register online to receive updates in the lead up to this event.
www.sourcekids.com.au/expo
Rest & Reset RETREAT
The new standard in therapy for brain-injured children
For parents and carers of children with additional needs
Combining parent education and intensive therapy to unlock children’s potential.
July 27-29th 2018 at Govinda Valley Retreat
CME | TheraSuit | Powerplate | Parent Education
Tickets - www.theroadunseen.com/restandresetretreat/shop/
A unique space to rest, reset, and nourish your body mind and soul. An opportunity to reconnect to your Self and connect with other parents who understand your challenges.
51 Lady Carrington Rd, Otford NSW 2508
Are you exhausted? Do you feel like your life is dictated by the needs of your child? Do you struggle to find time for yourself? Do you feel guilty for taking time out for yourself? Do you feel like you’ve lost your sense of Self? Come and Rest & Reset at this beautiful retreat, designed just for you.
Locations: Adelaide Melbourne • Auckland Sydney • Brisbane Road, Brighton SA To book your free assessment email admin@timmermansmethod.com.au or phone 0411 696 839
www.sourcekids.com.au
Tanya Savva
Wellness & Life Coach
A special-needs mum, Wellness & Life Coach, Yoga & Mindfulness Teacher, Remedial Massage therapist and Occupational Therapist (OT)
Phone 0404 862 695 Email info@theroadunseen.com
www.theroadunseen.com
!$ @theroadunseen
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Design your own customised bean bag • Made in Australia • Lifetime Warranty • Huge Colour range
SENSORY TOYSTORE excite the senses of the young and young at heart Range includes:
• Fidget toys • Kinetic sand • Fine Motor Skills • Chewing • Tactile • Educational • Sound & Light
SENSORY TOYSTORE
0423 154 584 !$ NDIS PROVIDER www.sensorytoystore.com.au
www.blissbeanbags.com.au
Personal experience with special needs children Cloth Nappy Doctor assistance with over 20 years combined experience with babies, children and older children. • • • • •
Modern cloth nappies Incontinence aids Swim pants for all ages Sensory and feeding products NDIA provider
email - contact@apikali.com.au
M ApikaliModernClothNappies www.apikali.com.au www.clothnappydoctor.com.au Proudly Supporting
Want to play safe? Our Foam balls are non-sting and have a soft feel to reduce fear of being hurt. Increase their confidence to play and develop gross motor skills.
View our entire Active Play range online
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SAVE THE DATES SYDNEY
8-9 MAY 2019
NOW TWO DAYS
BRISBANE
15-16 MAY 2019 CANBERRA
27-28 AUG 2019 PART OF
For more information contact Allison Miller on (02) 4646 1453 or amiller@intermedia.com.au
iCREATe
www.sourcekids.com.au
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Madeline Stuart
BY RACHEL WILLIAMS
A SHINING LIGHT Supermodels and superstars have an unparalleled platform to engage with the community and effect change if they wish. One Australian 21-year-old is redefining beauty and enhancing public perceptions about disability with every step she takes or pose she strikes around the globe. Madeline Stuart is breaking new ground as quickly as she is breaking down barriers on the international modelling circuit as the first adult professional model with Down syndrome. The Queenslander has just returned from a two-month stint in Europe and her mum, Rosanne, still can’t quite believe the trajectory of her daughter’s career. “We did not imagine in our wildest dreams that this would happen but it has been an amazing experience,” Rosanne says.
Madeline’s journey from being a teenager struggling with her weight to glamorous model has required dedication and discipline. It was in March, 2014, that she decided she wanted to get fitter – and so began the exercise campaign and healthy diet choices that would see her lose 20kgs. “It took 14 months for her to lose 17kgs and then she lost a further 3kgs over the past two years,” Rosanne explains. “At first it was really hard as she was used to eating junk food and also eating larger portions so it took her about two months to get used to eating smaller portions. “Before she started her health kick she would eat two large sushi rolls for afternoon tea after school but she learnt to just have one and now she would never think to have two and will happily leave food on her plate if she is full. “Now when she drives past McDonald’s she gives it the thumbs down and says ‘no mum!’. “The biggest change Madeline made was her exercise routine. She was always involved in sport but once she put her mind to getting fitter she increased this to swimming six days a week for the first year and gym three hours a week with a PT. Now she has stopped swimming and is in the gym five
Following world-wide media attention about her drastic transformation, modelling assignments quickly followed. Rosanne says she didn’t have any fears that Madeline would be exploited but did harbour some reservations about her daughter’s desire to step out into the public eye. “I was terrified about her becoming a public figure and if the press would accept her and write positive stories about her,” she admits. “It is always wonderful when you hear about inclusion and diversity but it is easy for people to put a negative spin on things and I did not want my daughter to get criticised.” The world’s reaction has been anything but negative. Maddy now has over one million followers across her social media accounts and she is being booked for appearances around the world as businesses accept the need to embrace non-traditional stereotypes. “People hire Madeline because either they hope their brand will go viral and get a lot of publicity and/or they believe in inclusion and diversity and want to help us change the world. Either way Madeline is getting work and the world is used to seeing someone with a disability in the press and it is not taboo and is breaking down stigmas attached to disability so it is win-win”. Her first-ever New York Fashion Week is still the most treasured experience for both model and mum. “She was so excited to feel the love and
A visual approach to teaching literacy
IMAGE: CARRI ANGEL PHOTOGRAPHY
40
to six days a week with a PT, she also dances four days a week at her dance school for people with disabilities called InsideOutside Dance and does basketball and cricket with Special Olympics.”
This innovative reading program has been designed to teach early reading and word recognition to both children and adults. It teaches sight words through fun, interactive and engaging activities, so that a diverse range of people can access the power and enjoyment of reading.
Kits can be purchased with NDIS Funding Email: info@readingourway.com.au Phone: (07) 3356 6655 www.readingourway.com.au ! ReadingOurWay
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between dropping her to class or taking her to sport etc. always working on my laptop on the cloud. “Now I am still a building surveyor but I have inspectors that do all the ground work for me and I have stepped back a little and manage it from wherever I am. “Most of my day is filled with talking to potential clients who want to work with Madeline or organising events she is signed with and making sure Madeline’s dance school is running smoothly. “I think I went from working 10 hour days running one company to now working about 16 hours a day running three companies, so eventually I will have to walk away from my building surveying business as I am just getting busier and busier with Madeline’s career which makes her happy so it is my first priority.”
IMAGE: CARRI ANGEL PHOTOGRAPHY
Rosanne’s message to other special needs parents is to believe in your child and don’t be scared.
acceptance from everyone that worked with her and everyone in the crowd,” Rosanne recalls. “For me, I think it was the first time Maddy was treated equally, everyone watched her in awe. As a parent of a person with Down syndrome, I had spent her life with people apologising to me that she had a disability and feeling sorry for me, I could not ever really understand why they reacted that way instead of celebrating Madeline’s life as I did – but their reactions always hurt never the less. “For the first time everyone saw how wonderful Madeline was, the way I had always felt, and finally I got to experience the reaction to her that I had always wished people would feel and show, the way parents with children without disability get to feel every day. It was beyond anything I could ever explain and I still get happy tears in my
“A lot of people over the past three years have accused me of exploiting my daughter, trying to live through her or putting her in harm’s way but Madeline has grown so much in such a wonderful way. “She is beyond happy. She gets to feel what it is like to be accepted unconditionally and loved by everyone and more importantly she has the opportunity to touch people’s lives and change them – show them that having a disability is not the end of the world, it is just a different ability and not something to be afraid of.
eyes remembering that moment.” While Madeline is busy being the centre of attention, behind the scenes Rosanne’s life had also altered significantly.
“She teaches people how to not judge, how to accept differences and to open their eyes to the beauty we all possess. She is my inspiration and the hope and inspiration of many and for that I will be eternally grateful.”
She is now managing her daughter’s career and jokes that her biggest job is to make sure Madeline doesn’t become too much of a Diva!
To follow Madeline’s modelling career, and the launch of her third collection of clothing which she will release in New York in September, you can visit her website, or like her on Facebook, Instagram or Twitter. To get involved with her dance school visit www.insideoutsidedanceensemble.com
“Mind you, I love how she is so confident and sure of herself now, it makes me very proud.” Rosanne, a building surveyor, has run her own company for 18 years but feels that may have to be put on hold to make the most of Madeline’s opportunities.
You can also meet Madeline at the Source Kids Disability Expo in Brisbane on July 6-7, where her dance school will be performing and she along with her Mum Rosanne will be guest Speakers. Find out more at www.sourcekids. com/expo
“Before Madeline’s career took off and before we started being overseas six months of the year, I would drive around doing inspections and building approvals in
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BY JULIE JONES
Travelling with a wheelchair Before our children were born, my husband and I were avid travellers, it was a joint interest, which we intended to share with any future children. Picturing our travels with our family-to-be we had no idea a wheelchair would become a necessary part of holiday planning. We were old hands at researching the logistics of a holiday, but when our son was born with cerebral palsy a wheelchair added a new element. Driving holidays were easy but trusting airline staff with such a vital piece of equipment was nerve-wracking. After many domestic and international flights, we’ve found there are steps that can be taken to make the process smoother. Here are our tips:
BOOKING A FLIGHT WITH A WHEELCHAIR Once you’ve decided on your destination, contact the airline’s special handling department to share any special needs or assistance you will need on your flight. When booking a flight with a wheelchair, have the dimensions and weight of the chair handy as they will want this information. For a power wheelchair, make sure you know the battery type.
PREPARING YOUR WHEELCHAIR FOR TRAVEL Baggage handlers and airline staff are in a hurry when loading an aircraft so it’s wise to do everything possible to make life easier for them. Attaching a laminated sheet to the wheelchair with a photo of the wheelchair, instructions on how to operate the chair and a personal message like “I’m looking forward to using my chair on holidays so thanks for doing your best to look after it” will hopefully ensure it arrives at your destination without damage. If travelling to a country where another language is used it’s wise to put this
message in English and the local language. If you have special paintwork on the frame of the chair or it’s new, protect the paintwork with Bradflex (foam tube which can be cut and taped to the frame and available from hardware stores) or bubble wrap.
AT THE AIRPORT Airlines generally allow, at no extra charge, a piece of mobility equipment (walking frame or wheelchair) in addition to the regular luggage allowance. The mobility equipment is tagged and is usually allowed to be used until boarding the plane. At this point the airline staff will take the wheelchair or mobility aid from a passenger to store under the aircraft. We take on board any removeable parts of the wheelchair including the cushion and arm rests to try to limit the chance of damage or loss. We chat to staff about how the brakes work and make sure they know not to lay the wheelchair on its side (something they seem prone to do).
SECURITY WITH A WHEELCHAIR A wheelchair user will be required to go through security screening in a special lane. Security staff will usually ask to pat down the wheelchair user and do swabs of the chair.
ON ARRIVAL AT YOUR DESTINATION Passengers with a mobility restriction will be last to disembark the aircraft. This allows time for the baggage handlers to bring the wheelchair to the aircraft door. Take five minutes when you receive the wheelchair to check there’s no damage. If there is damage, report it to the airline immediately. If the damage doesn’t affect it being used the airline will record the damage and give you a reference number to make a claim when you return home. If the wheelchair can’t be used, the airline will arrange for a repair.
ADDITIONAL TIPS Take a basic repair kit. Ask your wheelchair manufacturer for information on repairers at your destination. Photograph any damage to your wheelchair. If you have a wheelchair that is prescribed to you for your comfort, get a medical certificate that conveys this. Some airlines will encourage you to use the airline wheelchair from check-in, which isn’t possible for many with specialised seating. It can help to have a medical certificate if you want to use your wheelchair to the aircraft.
POWER WHEELCHAIR TIPS Research your destination and see if taking a power wheelchair will be restrictive. A manual chair can be more flexible in countries with a less accessible infrastructure. If travelling overseas consider the voltage as you may need a converter. Ask your wheelchair supplier to get clarification if you are unsure. Get a letter from the wheelchair supplier confirming the battery type of your chair.
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.
• Fully equipped rooms and gym • One on one sessions • Orthotic and equipment prescription • Gym circuit after school and Saturday mornings • Co-ordinated kid classes • Yoga and relaxation • Home and childcare visits
• Coorparoo • Parkwood • Albany Creek • Highgate Hill
Brisbane (07) 3324 2490 • Gold Coast (07) 5594 7014 www.movementsolutions.com.au
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Creating a lifetime of opportunities for children with autism AEIOU Foundation provides autism-specific early intervention to children aged 2 - 6 years. Our evidence-based program develops essential life skills, while providing family and transition support. We also assist families with access to the NDIS. To find your nearest centre, visit www.aeiou.org.au or call 1300 273 435
1300 273 435 www.aeiou.org.au
Suppliers of educational equipment, toys and resources for special needs, primary school, pre-school and playgroups.
Albert VIC 3127 (03) 9830 4336
MELBOURNE
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HOBART
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With over 40 locations and 100s of dedicated staff and services across all NSW, the ACT and the Coolangatta and Albury-Wodonga regions, you can trust that you will find the service you need, near you.
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COOPER'S TRAVELS Cooper Smith is 13 years old and a keen traveller and foodie. Cooper uses a manual wheelchair while he travels as he has dystonic quadriplegia cerebral palsy. You can see more of Cooper’s adventures on Instagram @thewheelfoodie
My name is Cooper and I am 13 years old. I have been to 23 countries so far and love exploring new places. When I travel overseas I use my manual wheelchair, which helps me explore many places. At home I use a power chair. My favourite place is South Korea. My favourite food is Indian. My favourite activity is swimming. I travel with my family. Mum, Dad and my brother and sister. I love travelling because I get to meet new people, talk to them, find out about how they live and work and of course the food!
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BY RACHEL WILLIAMS
ALLPLAY BRINGING FOOTY TO KIDS WITH DISABILITY
Winter wouldn’t be winter without Aussie Rules and a new program is ensuring children with a disability have the best chance of getting a kick.
The AllPlay Footy program, developed by Deakin University’s Child Study Centre, gives coaches, parents and clubs access to practical resources to make NAB AFL Auskick a safe and inclusive space for all children.
get children with disabilities participating in sports.”
AllPlay creator, and Director of the Deakin Child Study Centre, Professor Nicole Rinehart said the program aimed to level the playing field to allow greater participation.
Research completed by Deakin’s School of Psychology last year found simple adaptions to the NAB AFL Auskick program could encourage kids with autism spectrum disorder to increase physical activity and join in with their peers.
“Children with developmental challenges, such as autism, ADHD, cerebral palsy, language disorders and intellectual disabilities, often feel their disabilities are a barrier to participating in team sport,” Professor Rinehart said. “AllPlay is about opening up opportunities for sport to all children, because we can see that it has such a positive impact on not just their physical development, but their social development too. “This year we’ve been running a number of pre-learn days in metro and regional Victoria to provide opportunities for inclusion. The revamped AllPlay Footy website includes new resources for clubs to help ensure children have access to welcoming and inclusive community footy clubs. “The website also includes resources for health professionals to encourage them to
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Studies show that the barriers to participation include children having difficulties socialising in a session, parent and child fears, and a lack of knowledge on how to make programs inclusive.
“Sports participation can provide huge benefits beyond just physical exercise and better motor skills, such as improved psychological health and social functioning due to the social aspects of participation,” Professor Rinehart said. Simple adaptions outlined in the AllPlay resources include changing the length of activities, having more activity repetitions to learn new skills, allowing breaks for children to unwind and calm down if needed, and using visual instructions and schedules. Professor Rinehart said other important inclusive factors were using smaller groups, matching children on similar levels, allowing children to go at their own pace and having their parents involved as much as they needed.
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ALLPLAY TIPS HOW TO GET INVOLVED 1. Coaches Learn how to make your
sessions inclusive with the Coach Tips on www.allplayfooty.org.au
2. P arents
“Nearly 180,000 primary school aged children currently take part in NAB AFL Auskick nationally, and kids with disabilities deserve to be a part of that too,” she said.
Use our online directory to find an inclusive program for your child, go to www.allplayfooty.org.au and check out the learning resources, videos and tips we have to help your child or other children participate.
“Sport is a cornerstone of Australian culture, and it’s important for all children regardless of ability.” AllPlay is now in its second year of operation following a successful pilot program for children with autism spectrum disorder, which was held in 2014/15. AllPlay Footy consists of a number of programs.
3. H ealth practitioners
A Buddy Program in Access All Abilities Auskick centres is being trialled for children with and without additional needs to participate in Auskick together. 14 children participated in the pilot Buddy Program in 2017, and the program will be run at more centres this year. Three pre-learn days have been held in metropolitan and regional areas this season, with a focus on developmental and physical disabilities with more than a dozen children taking part. Parents of participants reported that it was a great initiative conducted in a safe and secure environment that allowed their children to feel less self conscious in a sporting environment. Professor Rinehart added: “Many parents have been very positive about the pre-learn day, saying the child enjoyed the sessions. It was also a good chance for the parents to socialise with each other, without having
Use the resources we have online to help encourage kids with disabilities to play sport.
4. Kids to explain anything about their child's behaviour.” AllPlay is a collaboration between Deakin’s Child Study Centre and the AFL. Moose Toys is a partner with support from the National Disability Insurance Agency. To find out more about AllPlay Footy visit the website at www.allplayfooty.org.au and follow AllPlay on Facebook for regular news and updates.
Check out the kids’ resources on our website such as the footy stories.
5. R esearch Join our research register
and participate in the surveys and research studies we often conduct.
Gee’d up from the feet up! La Banj is a unique children’s sneaker label specialising in creating cleverly designed sneakers, which fully open up and allow your child’s foot to slide right in.
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It’s the start of daylight saving
Stay Safe this Winter Time to change your smoke alarm batteries
Know the Fire and Carbon Monoxide risks during cold weather Winter months are a peak time for house fires and carbon monoxide poisonings, with many incidents due to improperly ventilated or malfunctioning heater sources. Families can better protect themselves by having working smoke alarms and carbon monoxide alarms on every level of the home and in sleeping areas.
For fire safety tips during this winter season, visit www.quell.com.au.
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Making coordinating disability care easier, and better. Coordinating care for a person with a disability is a shared journey of responsibility and rewards. To reach a personal milestone however small is something to be celebrated. Success is the partner of challenge and is only achieved through incredible effort and sacrifice from families. We innovate so your family can flourish. Sameview is building a technology platform for care coordination; giving families the confidence to build their own team, set their own goals, and walk their own path.
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GoTo Seat
Wonsie specialises in hard-to-find larger bodysuits for older children and adults. The GoTo Seat is a lightweight, portable, postural support seat for kids with disabilities.
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BY BRITTANY DA SILVA, HANEN SPEECH-LANGUAGE PATHOLOGIST
Let’s go for a walk - the Hanen way! How to build your child’s language skills on your next walk outdoors. Even though winter days can be a bit chilly, going for a walk with your child is always a great way to get exercise and fresh air. But did you know that you can build your child’s language skills while walking? Here are some Hanen strategies that you can use to help to build your child’s communication and language skills while going for a walk.
OBSERVE, WAIT AND LISTEN™ (OWL™) • Observe what your child is interested in and any messages they are sending you. It can be easier to observe their interests and messages if you crouch down so that you’re face to face. You might observe your child sending messages by looking at you, pointing or saying something about their interest. • Wait (without talking) for your child to send you a message. Some parents find it helpful to count to five in their head to give their child space to send a message. • Listen carefully to their sounds and words. When you Observe, Wait and Listen to your child’s messages, you let them start and lead the interaction! They will feel motivated to communicate with you when they lead interactions about their interests.
FOLLOW YOUR CHILD’S LEAD Once you’ve Observed, Waited and Listened to your child’s message, then you can follow your child’s lead by responding immediately with interest. When you respond immediately, your child can learn new words and ideas that match what they are interested in. You can follow your child’s lead by using the following strategies: • Join in and play • Imitate • Interpret • Comment
Make the most of your child’s NDIS funding! Your child’s funding may be capped, but the amount of support he receives doesn’t need to be. When you choose to invest your child’s NDIS funding in the Hanen approach, you’re truly taking the lead in your child’s early intervention by learning how to help him yourself. When you do this, you no longer have to worry about the limited number of therapy hours your child is entitled to, and whether it will be enough.
JOIN IN AND PLAY Play like a child - Join in and play the way your child is playing (without telling him or her how they should play).
Find out more at: www.hanen.org/NDIS-funding
- If they stack sticks, stop what you’re doing and stack sticks together. 50
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Get your own toys - If your child starts collecting rocks on your walk, start your own collection of rocks. If they throw the rocks into a creek, you can join in by throwing your rocks in the creek too.
Use fun sounds and words - If you are throwing rocks into the water, you could say a fun word, like, “Splash!” or “Plop!” Try adding a hand gesture to emphasise the fun words.
Pretend - If your child is pretending with the sticks, stones, leaves and other things they are finding outside, join in on the make-believe world. For example, if your child says they are making a pie out of sticks and leaves, you could copy them. Then wait and see what he or she does. To add to the fun, you could say that your pie is ready to go in the oven!
IMITATE Imitate their actions, sounds and words. For example, if your child is marching, march along too. Imitating your child is a fun way to get an interaction going. You could say, “We’re marching! March, march, march!”
INTERPRET Interpret messages by putting into words what you think your child is trying to tell you. For example, if he or she holds up a stick to show you the bark peeling off, interpret the message by putting words to it, by saying, “The bark is peeling off the stick.” You could move your hands in a peeling motion to show what peeling means.
COMMENT Make a fun comment that’s matched to what your child is doing or saying at that moment. For example, if they point to a bird’s nest, you could say, “Wow! There’s a bird’s nest.” Observe, Wait and Listen for your child to send you another message. They might respond by saying, “nuh” for nest. Then you could comment, “Yes, that’s the nest. The mama bird lays her eggs in the nest.” OWL again for your child’s next turn in the interaction.
REPEAT, REPEAT, REPEAT! When you’re following your child’s lead by interpreting his messages and making fun comments, a great way to help them learn to say words is to repeat important words. You can repeat important words on your turn in back and forth interactions (see the conversation about the bird’s nest described above). You can also repeat important words throughout the day. For example, if you introduced the word “peel” when you were talking about the peeling bark, then you could use “peel” again when they are peeling off clothes or when you’re peeling an apple for a snack. There’s no need to ask your child to repeat the word after you. They are learning just by hearing it.
their lead and repeat important words, you create opportunities for them to learn about the world and say words. So, have fun interacting with your child on your next walk!
ABOUT THE HANEN CENTRE
ON YOUR NEXT WALK…
Founded in 1975, The Hanen Centre is a not-for-profit charitable organisation with a global reach. Its mission is to provide parents, caregivers, early childhood educators and speech-language pathologists with the knowledge and training they need to help young children develop the best possible language, social and literacy skills. This includes children who have or are at risk for language delays, those with developmental challenges such as autism. For more information, please visit www.hanen.org
When you Observe, Wait and Listen to your child’s messages, follow
© Hanen Early Language Program, 2018.
Allowah provides Disability Support services for children aged 0 - 18 years with complex disabilities and medical conditions.
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Allowah 8 Perry St Dundas Valley NSW 2117 02 8877 3400 admin@allowah.org.au
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BY RACHEL WILLIAMS
RARE DISEASE
KLEEFSTRA SYNDROME Kiele Robinson was counselled about having a termination when early testing during her pregnancy showed a high risk of a few medical challenges. But it was not an option for the West Australian woman and her husband Steve, who longed for another precious baby to provide a sibling for daughter Ella. “Considering my age (44) and history of recurrent miscarriage, this was a highlyvalued pregnancy and child, and we declined any intervention,’’ recalls Kiele. Four years later they have no regrets despite their beautiful, happy little boy Flynn being diagnosed with the extremely rare Kleefstra Syndrome – just 15 people in Australia have it.
Kiele and Steve quit their high-paying corporate jobs to set up their own business specialising in sensory products for special needs children and to dedicate their time to providing Flynn with the best chance of a fulfilling life. It’s been a challenging and exhausting few years for the family. Flynn was born in April, 2014. Kiele remembers that her early pregnancy tests showed high risk for the three syndromes tested (down, patau’s and Edward’s). “Our obstetrician counselled us about having amniocentesis and to start thinking about whether we would consider termination,” she says. “We had extra scans to look for
abnormalities but none were seen during the pregnancy.” Once he entered the world though, the family’s “normal” was irrevocably altered. He had a small hole in his heart, which closed on its own and despite doing well in the early stages, Kiele knew something wasn’t right. “To me he seemed to be in the baby stage for a long time. He was unsettled with sleep and had a lot of other small issues – jaundice after he was born, reflux, a high palate, umbilical hernia, low muscle tone, an episode with a severe urinary infection caused by reflux within his urinary system and frequent respiratory infections… after six months his development seemed to slow and by 10 months it was obvious to me something was wrong and he was definitely delayed,” she recalls. “I did a lot of reading, and ‘googling’, and based on his symptoms and physical appearance I suspected Kleefstra syndrome which is incredibly rare – reading about it was like reading about him! “I shared my suspicions with his paediatrician - she did not think there was anything to be concerned about but agreed to do genetic testing, which was done when he was aged 12 months. The result took three months to get back and confirmed he had Kleefstra syndrome.” There were mixed feelings of relief at a diagnosis but also devastation at Flynn’s long-term outlook. “I cried the night I found out and allowed myself to process that, but after that it was more about “what we can do for him to make life easier and help him achieve the things in life that he needs or wants”. “Now it is just part of our day to day life, and I am really just proud of him and his
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determination to reach those milestones. They take longer so it’s really rewarding when he does.” Flynn didn’t start walking until he was two and has very delayed speech. Kiele says he will likely be diagnosed with an intellectual disability in the future. The Kinder kid has feeding issues and is prone to choking. He also still wears nappies. “The hard thing is not always knowing the full impact his syndrome has on him – for example he has a really high pain threshold and late last year broke his ankle – but kept walking on it. It wasn’t until three weeks later when he was still limping that it was found to be broken. “Our GP now knows that if we attend with a concern, then to really investigate closely as often the problem is probably worse than Flynn is demonstrating.” Perhaps one of the hardest symptoms to manage is Flynn’s sleep disorder that leaves mum and dad exhausted. “He doesn’t achieve much REM sleep – it has improved but at the moment we continue to battle him being unsettled from about midnight and he wakes early – often at 4am to 4.30am so we are pretty exhausted!” For six-year-old sister Ella, challenges emerge when dealing with her baby brother’s behavioural issues. “He used to bang his head, self-harm and bite himself and others but does less of that now now that his communication is improving,” Kiele explains. “He does get quite moody and can switch from being happy and laughing one minute, to upset, crying and destructive or violent and removing his nappy the next second. “He pulls his sister’s hair and she has had to learn to be aware of the signs of his mood shifting in order to protect herself.” Kiele says one of the biggest frustrations is the lack of services for people with extremely rare conditions.
families on Facebook who share information and who have been the main drivers for more research, including conferences in the UK and US for Kleefstra families – usually attended by Dr Kleefstra (the geneticist from the Netherlands who has done most of the initial research, and who the syndrome is named after).” It’s through Facebook that Kiele and Steve now spread the word about their business The Sensory Kids Outlet, which also has a bricks and mortar store in Malaga, outside of Perth.
“Often we know more than the doctors do about the condition, which is hard as we don’t won’t to be those pushy annoying parents – but we probably are!
“Our main aim was to support families like ours who needed somewhere safe and understanding that they could go to get good service and great products – at great prices, as we also know how expensive it can be having a child with special needs,” says Steve.
“Most of the information about the syndrome is anecdotal, and shared between families so very little is in the research or known by medical specialists.
“We have incorporated our Essential Oil business into the main business as another avenue to support families with issues such as sleep, behaviour and calming.
“We have an amazing worldwide network of
“We also use it as a forum for advocacy in
special needs – providing information, links to supportive community organisations or activities, plus plenty of light-hearted posts. It’s about supporting a community of likeminded parents.” Steve and Kiele are also setting up a not-forprofit group, Kleefstra Syndrome Australia, to provide a source of support, information, advocacy and community links. No doubt it will be a useful resource for all Kleefstra families navigating unchartered waters. As for Flynn’s future, his parents say they hope their social little boy with a cheeky personality and a “great, giggling laugh” will learn to live independently. “I want his sister involved in his life but don’t want her to have to bear the long-term responsibility for him,” Kiele admits. “At the moment we just take it one day at a time and help him with learning as much as he can, and make as much use of his early intervention therapy that we can.”
A fitted sheet that you and your child will love! The unique design is what makes this sheet so beautiful and comfortable to sleep on. It can help you move your child more easily while reducing any friction and the risk of skin breakdown causing pressure ulcers Call now and find out where you can trial the Wonder Sheet.
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TiLite Pilot Ready for take off
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