Source Kids Winter 2018 - Queensland

ISSUE 16 | WINTER 2018

QUEENSLAND

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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2018

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

- Limit meal times to 20-30 minutes - Acknowledge your child when they try new foods or sit properly at the table - Stay 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. Helps 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.

• The 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).

• Your 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:

•S ome are very structured and will use “time out” and “spoon removal” techniques to make a child eat. ome are less structured but still •S therapist-directed where a therapist plays with food whilst systematically getting the child to touch, smell and finally eat a food. oving towards less therapist directed •M 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.

•A nd 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

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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

19

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

Y

CM

MY

CY

CMY

K

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...

about TADQ?

BY OPAL HALLIDAY

Assistive technology can be essential to support children around the home or while out and about and can bring joy, independence and confidence to everyday lives. Sometimes, simple tasks such as getting on the toilet, riding a bike or eating dinner can be a challenge or near impossible, even with commercially available items to help with daily activities.

Sarah Thompson used TADQ’s services for her four-year-old son, Frankie.

So, what happens when that commercially available piece of equipment does not work or does not exist?

The TADQ team worked at short notice with FECS physiotherapists to assess the different options and the viability of using a standard Thule trailer by meeting us at the bike shop.

We really appreciated the attention we were given and found the staff and volunteers to be wonderfully resourceful.

Much of the time, children and carers just cope with the equipment they have as best they can. But there is a solution.

TADQ is a for-purpose organisation that designs and creates customised assistive technology, and has been doing so for over 30 years. They understand that each child grows and develops at their own pace, that they may have different abilities and interests from their peers, and they understand that their need for equipment to live life to the max is different too.

Their therapists and engineers will work with you to create the perfect piece of assistive technology. From bikes, to cutlery, steps, gaming controllers, seats, tables the list endless.

Frankie sustained a severe brain injury from a seizure over two years ago. He is unable to sit up independently and requires assistance with all care activities. We approached TADQ about adapting a standard Thule bike trailer which could also be converted to a stroller so that we could include Frankie in outdoor family activities and a planned trip to New Zealand.

Having a rapidly growing child with complex needs means we are constantly assessing, modifying and applying for funding for new equipment and we really appreciated the problem solving and creative approach of TADQ staff. Being able to get the equipment in time for our holiday and to avoid having to purchase a special needs trailer at much greater cost was brilliant.

We still use the trailer to take Frankie for bike rides by the river every week, which we all love. Because of the success of our New Zealand trip and the fact that he is

TADQ ALSO RUN THE FREEDOM WHEELS BIKE PROGRAM, WHICH CUSTOMISES STANDARD BIKES TO GIVE INDEPENDENCE TO CHILDREN WITH DISABILITIES BY ALLOWING THEM TO RIDE A BIKE.

rapidly outgrowing his trailer and car seat, we decided to take one last overseas family holiday to Canada, which included bike rides in his trailer and was also a big success. We can’t thank TADQ enough for the wonderful job they did.

TADQ also run the Freedom Wheels Bike Program, which customises standard bikes to give independence to children with disabilities by allowing them to ride a bike.

These bikes give children new opportunities for independence and inclusion.

Through the program a team of therapists, engineers and volunteers personalise bikes to the individual needs of the client. An assessment process is carried out to ensure that the client receives a bike that is suited to their age, height, weight, type of disability and physical and cognitive abilities.

A range of supports can be added to meet the needs of each child, for example postural supports, footcups, modified handlebars and outrigger wheels. These can be left attached to the bike or removed easily, without tools, for storage and transport.

Lachlan received a modified bike through the program and according to mum, Victoria, it has been one of the best and most used pieces of disability/modified equipment that they’ve had. She says that Lachlan enjoys the freedom and control of being able to ride independently with his brother. The bike provides something he loves that they can do as a family and strengthens his legs at the same time.

Whilst TADQ are often the designer and creator of equipment, they say that their clients are the visionary, the dreamer and without these dreams enthusiasm and passion they can’t fulfil their role. So, when you next come up against a challenge, ask yourself if there is a way to do it, and if you don’t know. Ask them!

For more information on how TADQ can help you call 1300 663 243 or (07) 3216 1733, visit www.tadq.org.au or email info@tadq.org.au

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 JUNE 1-30 CMV Awareness Month www.cmv.org.au

13 ICANIWILL Charity Race Day – Doomben Racecourse, Brisbane

winter

2 Day Out with Thomas Sensory Friendly Session, The Workshops Rail Museum, Ipswich

29 Sensory movie session – Early Man

www.theworkshops.qm.qld.gov.au

30 International Day of Friendship

6-7 - Source Kids Disability Expo, Brisbane Exhibition Centre

www.icaniwill.org.au

5-11

13 Neuro-rehabilitation Awareness Day

Events Cinemas & Grand cinemas nationwide

26-1 July

Out of the Box Festival www.outoftheboxfestival.com.au

29

Red Nose Day

rednoseday.com.au

EOS Awareness Week

www.eosaware.com

17 Sensory movie screenings (Sherlock Gnomes, Incredibles 2

www.continence.org.au

www.un.org/en/events/ friendshipday

AUGUST

www.paddleforkids.com.au

World Continence Week

(contact individual cinemas)

www.sourcekids.com.au/expo

16 Paddle for Kids – South Bank Cultural Forecourt, Brisbane

18-24

www.ain-rehab.org.au

9-12 Carer’s Link Campability School Holiday Camp, Tallebudgera, Gold Coast www.disabilitysupportqld.org.au/ campability-2018-carers-link

11 Sensory Pine Valley Train Day, Pine Valley Railway, Warner

21 Aug-2 Sep George’s Marvellous Medicine, QPAC, Brisbane www.qpac.com.au/event/george_ marvellous_medicine_18

26

Bridge to Brisbane

www.bridgetobrisbane.com.au

www.sensorysouls.com.au

20

National Pyjama Day

www.nationalpyjamaday.com

21 Sensory Souls’ Driven

by What’s Inside Event, Caboolture Showgrounds www.sensorysouls.com.au

30 June-1 July

Gold Coast Marathon

www.goldcoastmarathon.com.au

JULY 1-31

Fragile X Awareness Month PHOTO BY DYLAN EVANS

www.fragilex.org.au

2 Corpus Callosum Awareness Day www.ausdocc.org.au

www.sourcekids.com.au

WINTER 2018

25

Chirio FAMILY PROFILE

MEET THE

FAMILY

OUR FAMILY CONSISTS OF: Toni Mum Mum, Janelle Mummy, Hudson and Mason who are identical twins.

WHERE DO YOU LIVE? We live on the beautiful Fraser Coast in Queensland. We love the area and the surrounding community and are proud to call it home.

WHAT ARE YOUR CHILDREN’S DIAGNOSIS AND HOW DOES IT AFFECT THEM? Hudson and Mason both had strokes prior to their birth. Hudson is diagnosed with Quadriplegic Cerebral Palsy, Epilepsy, Hearing Impairment, Cortical Vision Impairment, Right Homonymous Hemianopia (blind in the right side of both eyes), Global Developmental Delay and is non-verbal.

Mason is diagnosed with Hypotonic Cerebral Palsy with a Bulbar Involvement, Global Developmental Delay and ASD.

WHAT LED TO THEIR DIAGNOSIS? At three months old Hudson was having screaming episodes on and off, which seemed to last for around 12 hours. After one episode the whole right side of his body went limp and his eyes and head deviated to the left. We saw the boys' paediatrician and she immediately told us Hudson had had a bleed and needed an urgent MRI. We were told by the radiologist Hudson had suffered a massive stroke and had lost over 75 per cent of the left hemisphere of his brain.

The MRI scans were sent to Brisbane and a haematologist found the damage was at least four months old, which meant the stroke had happened before Hudson’s birth.

We were referred to a neurologist in Brisbane who confirmed Hudson had a massive stroke and she was not sure what the implications would be. They told us that Hudson had a massive seizure and that’s what caused “Todd’s Paralysis”, (the right sided weakness and his left deviation).

Hudson had been suffering seizures on and off, which we had no idea about.

Over time we noticed that Mason had some similar traits to Hudson and in August 2016 after pushing for an MRI it was discovered Mason too had brain damage as a result of Hudson’s stroke.

26

WINTER 2018

ARE YOUR CHILDREN IN SCHOOL? HOW ARE THEY DOING/HOW ARE THEY SUPPORTED? Both Hudson and Mason attend Kindergarten five days a week. Hudson is supported with a 1-1 carer and Mason is supported with a 3-1 carer. Both boys have/ are reaching their milestones in their own time and I strongly believe before long they will be able to obtain all milestones. Both boys will be attending Prep in a State primary school next year.

WHAT THERAPIES DO YOUR CHILDREN DO? DO YOU HAVE ANY TIPS/TRICKS FOR FITTING THERAPY INTO YOUR LIFE? Hudson and Mason both attend physio, speech and OT and they both have 1-1 swimming lessons. Toni is a FIFO worker and Janelle is a special needs teacher aide so all therapies and swimming lessons are done of an afternoon after school which makes for a busy week.

WHAT CURRENT GOALS DO YOUR CHILDREN OR YOUR FAMILY HAVE? Currently we are trying to get the boys ready to attend their first year of Prep. We are also in the process of trying to toilet train Hudson.

www.sourcekids.com.au

WHAT ADVICE WOULD YOU SHARE WITH SOMEONE STARTING OUT ON THE SPECIAL NEEDS JOURNEY? Take everything you’re told from the specialists with a grain of salt! We were told at 12 weeks old that “Hudson has a lot of damage, expect him to do nothing and whatever he does will be a miracle”. By an absolute miracle on Sunday 5 March, four weeks shy of his fourth birthday, Hudson took his first steps! This is something we never thought would be possible.

AND WHAT’S THE MOST ANNOYING/UNHELPFUL/ STRANGE ADVICE YOU’VE EVEN BEEN GIVEN? “Why do you bother with all the therapies, why don’t you just leave the boys be?”(!)

Without the boys intensive therapies, I do not believe they would be where they are today.

WHAT DO YOU DO FOR YOU TIME? We like to spend lots of family time at the beach and camping. Watching the boys playing and running independently is something I will never tire of.

Phoenix Place Inc. We are committed to delivering services and activities that respond to the needs and strengths of those who use our service.

Empowering participants to enable an active role in decisions that affect their lives and to make choices for themselves.

We have great experience in Support Coordination and Plan Management and are ready to help you!

WHAT ARE YOUR HOPES FOR THE FUTURE?

needs prams, our toilet step and our change table with a built in staircase.

We are hopeful the boys will continue to reach their full potential and lead a fulfilling life.

People (or businesses) we love:

WE WOULD NEVER MANAGE WITHOUT THE FOLLOWING… Products we love: Hudson’s wheelchair, both boys special

Supporting, advocating and empowering people with Down syndrome • Information, support and resources for families, employers, service providers and health professionals • NDIS support and services • Education support • Workshops and training • Community awareness and systemic advocacy

Moreton Bay: 0403 428 759 Mackay: 07 4953 5222 www.phoenixplace.org.au

Brisbane’s Best LEGO Specialty Shop • Huge LEGO displays and Dioramas to see • LEGO Build area for kids to get creative • Open 7 days a week • Variety of activities priced from only $4.00 • Great sensory activity for helping kids focus • Quiet times available • Fully stocked LEGO shop with huge range of LEGO items

Shop D, 1 Finucane Road, Capalaba QLD 4057

Phone: 07 3390 1288

www.bricksnfun.com.au

www.sourcekids.com.au

MEMBERSHIP IS FREE JOIN UP TO RECEIVE REGULAR NEWS AND UPDATES

Email - office@dsaq.org.au Phone - 07 3356 6655 www.dsaq.org.au ! DSQLD

! phoenixplaceinc

LEGO HEAVEN!

All of our friends and family are so amazing and supportive. We also have a lot of support from Stefan’s Masks Foundation: “Make A Sick Kid Smile”. Without Stefan’s Foundation we would not have Hudson and Mason’s special needs prams and Hudson’s toilet step.

Dietitian

specialising in food allergies and intolerances for infants, breastfeeding mothers and children Jillian is a practicing member of the Dietitian’s Association of Australia (DAA) and chairs the DAA allergy and intolerance group for QLD. She is an Associate Member of the Australasian Society of Clinical Immunology and Allergy (ASCIA).

info@briskidsnutrition.com • 0413 431 771 www.briskidsnutrition.com

Wonderland

Face Paint & Makeup Face painting, Balloon twisting Children’s parties Rebecca - 0408 893 486

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WE CARE ABOUT YOUR CHILD’S SAFETY • • • •

Uniformed & trained drivers, so you know your child is with a professional Easy to identify vehicles, so your child doesn’t get into a car with a stranger Camera surveillance in every cab, for your peace of mind We’re here to help, speak to a real person 24/7

blackandwhitecabs.com.au

Call Us 133 222 | Download our App | Book Online Sunshine Butterflies is a registered charity and not-for-profit organisation providing learning, respite, educational and recreational programs for people living with a disability and their families.

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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

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Do it for yourself The right technology can make a world of difference.

Let us help you choose the right technology.

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with Simple Upgrades To Your Vehicle • Van Fit Outs • Turney Seats • Hoists • Restraints

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To find out how to simplify your family’s transportation

Call (07) 3474 6575 NDIS Provider # 4050004526

Brisbane Service Agents for:

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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

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

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

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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

WINTER 2018

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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

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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

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Suppliers of educational equipment, toys and resources for special needs, primary school, pre-school and playgroups.

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(03) 6334 9996 (03) 6231 0499

CELEBRATING 40 YEARS

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

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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.

When that moment comes, we’re here.

For people with disabilities. *Please note: Numbers may vary from time to time and are subject to change.

1800 236 762

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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

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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.

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It’s the start of daylight saving

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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

WINTER 2018

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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.

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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.”

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