Source Kids Spring 2016 by Source Kids

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Issue 9 - Spring 2016

Managing eating Tips, products and recipes a Tripp Trapp chair

Home safety • CHaRGe syndRome • employment sHootinG Hoops witH RolleRs staR tom o’neill-tHoRne

Uncomplicated nutrition, pure and simple.

bellamysorganic.com.au

SPRING 2016

CONTENTS Features 14

Safety in the home feature

14 Manage the risks – easy ‘at home’ adaptions 17 First aid in the home 18 First aid basics 20 Have you got an emergency plan? 22 Internet safety

Starting with Julius

Managing eating feature

26 OT tips: managing cutlery 27 Tips to overcome fussy eating in children 28 Product feature 30 Making mealtimes fun 31 Food ideas

Employment feature

38 Ten tips for transition into the workplace 39 The Compass Institute 40 Case study – Josh Flintoff

My child’s a runner – what do I do?

Regulars 4 Welcome

Products we love

Cooper’s travels

Family profile – Prior family

Rare disease in profile – CHARGE Syndrome

Sporty kids – shooting hoops – basketball in profile

Special needs teacher in focus – Berris Smith

We love – online and social stuff

Directory

Competition corner

What’s on calendar

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Welcome to Source Kids Following the last issue of Source Kids that featured car safety, I got serious about my family’s car situation. We’ve been living with it for many months now and it’s been driving my husband and I crazy! We have two cars – a wagon and a dual cab ‘truck’. Weekday life is just dandy as our SN daughter catches the bus to and from school, meaning it’s only drop-offs with our five-year-old typical son. Weekends are a whole different ball game – with screaming, hitting, pinching and even undoing seatbelts in the back. On more occasions than I can count, we’ve had near accidents because of this carry-on. So we decided to sort it out – and we’re upsizing! I laugh when friends and family ask: “Why do you need a 7-seat vehicle?” or “Have you got some news to tell us?” It’s simple, my sanity in the car is important and we now need a 7-seater to separate our kids – for peace and quiet, and somewhat relaxing weekends. This leads into our main feature this issue, Safety in the Home. Just as we need safety (and peace) in the car, as SN parents we also need some sanity and peace in our homes – maybe even more so than in the car. So enjoy our safety feature, which aims to bring some ‘ease’ into your home. We also feature employment after school with some great tips to get your school-leaver ready and an inspiring case study. Mealtime can be tricky in a lot of homes, and our feature on managing eating delves into some of the main issues with plenty of tips. As usual, we are also showcasing a fantastic family, looking at basketball plus so much more. And once you’ve read this issue, if you haven’t already, pour yourself a cup of tea and check out our new website (same address as before www.sourcekids.com.au). It is jam-packed with great information and we welcome a number of fantastic new contributors including our cover stars’ mum, Jen Prior, who writes from the heart, plus some other great writers with so much to share. You won’t be disappointed. Until summer, when the sun is shining, enjoy the read!

Emma Price Publisher

Source Kids CDSA PO Box 5279, Launceston TAS 7250 Phone: 03 6327 1995 ABN: 66 434 598 812 Web: www.sourcekids.com.au Send all letters and submissions to: Source Kids, PO Box 5279 Launceston TAS 7250 or email editor@sourcekids.com.au Editorial enquiries: 03 6327 1995

Editorial Editor: Marie-Louise Willis  Writers: Marie-Louise Willis and Rachel Williams Contributors: Emma Price, Cooper Smith, Robyn Duregger, Rene Fraser, Michael Young, Tanya Curtis, Zoe Hutchinson, Deb Flintoff, Naomi Sirianni and Catia Malaquias. Advertising & Marketing Advertising Sales Executive: Naomi Sirianni For advertising enquires please call 0447 755 043 or email advertising@sourcekids.com.au Graphic design Imogen Brown

F L Y I N G

C O L O U R S

Editorial and advertising in Source Kids is based on material, written and verbal, provided by contributors and advertisers. No responsibility is taken for errors or omissions and opinions expressed do not necessarily reflect those of the publisher. All material in Source Kids is subject to copyright provisions. No part of this publication may be reproduced without written permission by the publisher. Distribution Source Kids is distributed through therapy centres, hospitals, paediatricians, special needs schools and early intervention centres. For distribution enquires, contact info@sourcekids.com.au

Publisher Emma Price

P R I N T I N G

Front Cover: Photography by mum extraordinaire, Jen Prior. Our cover stars for this Spring Issue cover are Emily and Reese Prior. Twin sisters bound together by love, support and compassion. This image symbolises their friendship but also represents their determination for equality on a global scale.

They wear ‘Pride Socks’ to convey the message: be proud of who you are and have the confidence to chase and achieve your dreams! You can learn more about Emily and Reese in our Spring family profile.

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a set of Education Essentials images valued at $89. Enter online at www.sourcekids.com.au

ShowMe Images Malak-e Safety Watch The Malak-e Safety Watch lets your kids be kids. It lets you call, track and monitor them anywhere, anytime. It is made of high quality thermoplastic material and is made for children to wear for everyday use. The watch has a wearable GPS tracker and phone all-in-one, with a very unique app enabling automated sound, vibrate and text notification whenever the child falls, takes the watch off or leaves a safety area. It works on prepaid or a postpaid plan via Vodafone, Optus or Telstra networks. Available in a variety of colours, the Malak-e Safety Watch and app is peace of mind in your pocket!

ShowMe Images are a great resource for anyone who uses visual supports to communicate with children. The images are beautiful, contemporary and respectful. They include people from a range of diverse cultures and they have been designed specifically for Australian settings. There are over 500 images on a handy thumb drive that’s yours to keep. It’s really easy to browse and find what you need. The images are aimed at early learning and primary school aged children, and you can use them to explain transitions, increase confidence and improve communication. This new style of images has received a big thumbs up from professionals, parents and kids alike. They’re completely flexible to use in your way, making the resources that are right for your child’s needs. www.showmeimages.com

www.letkidsbekids.com.au

Dreambaby Cosmopolitan Gate

Discovery Series DCP12 Whether it’s in therapy or out riding with friends, the Discovery DCP 12 is a great way to exercise, socialise and mobilise. It’s the bike children want for its funky design, bright colours and great ride. More than freedom, Discovery lets an individual create their own ‘sense of cool’. www.specialneedssolutions.com.au

The Cosmopolitan Security Gate is a modern, sturdy and stylish wooden gate that helps to keep children safe within the home. Ideal for when busy little children are on the move! The one-handed operation coupled with the stylish design and sturdy construction makes this gate a musthave for families looking to keep their children safe, all day, every day. A smart stay-open feature is convenient: as are the optional extensions. The attractive timber and metal construction will blend in, whether your home is classical or contemporary. www.dreambaby.com.au Dreambaby®is giving you and your family the chance to win a home safety package valued at over $136 including a Harrogate bed rail, furniture anchor, furniture straps (2 pack) and a flat screen TV saver.

SPRING 2016

Malak e Watch 1/2 page

The Malak-e Safety Watch lets your kids be kids. It lets you call, Track and Monitor them anywhere, anytime. The Malak-e Safety Watch and App, Peace of mind in your pocket.

www.letkidsbekids.com.au

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SPRING 2016

Cooper’s Travels

Japan

I have always wanted to go to Japan. When I thought about Japan I imagined sushi, gaming, modern buildings and amazing food. In May 2016 I got to find out for myself! We were going to Tokyo for two weeks. Here are my five favourite things! 1. M y favourite restaurant allowed me to order my meal using an iPad. You can see the menu on the screen, press a button and your food comes to your table on a track! I could do it all by myself. 2. Akihabara is a gamers’ playground. We looked underground and saw retro shops, games, anime and lots of soft toys. 3. The trains can take you anywhere. They are always on time, clean and everyone is very polite and they don’t push. It was easy using my wheelchair.

4. My favourite place to get a quick snack was at Lawsons. I loved the rice sushi triangle and Japanese chocolate. It was amazing. 5. Tokyo was so different to Melbourne, I even got to feed and pat a hedgehog at a cafe! I would love to go back and you should put it on the top of your travel list.

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Our family consists of:

How we manage this:

Luke Jen (myself) Justin 13 Reese 9 Emily 9 Jack 6

Emily and Reese were born at 29 weeks, weighing 1.1 and 1.2kg. They spent the first 11 weeks of their life in hospital. From the time we took them home (at around term) early intervention began.

We lost a little boy (Ryan) in late pregnancy due to a Congenital Heart Defect. Both of our parents live within 10 minutes from us and are very involved with our family. We also have a dog and a cat.

We live: Perth, Western Australia. We live in a wonderful street, where just about every house has children. Our kids all play together and there is always a football, cricket, basketball or hide and seek game happening in the street. Our local school is within walking distance as are all of our children’s friends. We absolutely love where we live.

Our children are dealing with the following disabilities or disorders: Emily - Spastic Diplegia (Cerebral Palsy), and Epilepsy Reese - Left Hemiplegia (Cerebral Palsy), Moderate Bilateral Hearing Loss and Asthma Jack - Asthma

While we were told the news of the likelihood of Emily having Cerebral Palsy at four weeks of age (due to a brain bleed), Reese wasn’t diagnosed until she was four years old. We manage Cerebral Palsy because it is simply a part of our life. Looking back now it almost seemed like an easy transition and quite ‘normal’ due to their premature birth and NICU hospitalisation. The process had begun from the minute they were born. I think the hardest part of this journey initially was the ‘wait and see’ for Emily. The doctors couldn’t tell us what she would or wouldn’t be able to do. We just had to wait and see and I think the unknown in those early years was the hardest part. You imagine the worst, you fear the worst and you are still coming to terms with what it all means. Early intervention was tough as it was very intensive. It was also a very tough time for me emotionally. I was taking twin girls (and managing a five-year-old too) to hospital appointments and therapy. I was grieving the diagnosis and the unknown of how having Cerebral Palsy would affect Emily. In hindsight there was probably some undiagnosed post-traumatic stress and post-natal depression in the midst of it all too.

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We also think you are only as good as the team that surrounds you and we have an amazing group of doctors, therapists, organisations and teachers that are a part of ‘Team Emily’. It has taken a while to establish our team. Having the right team around your child is so important and if someone doesn’t work, then we find someone new. Only people who are invested and on the ‘same page’ get to stay on our team. It doesn’t mean that we always have to agree on everything but it means we all need to be heading in the same direction.

Reese:

I wasn’t sure I could actually cope with disability but together with my wonderful husband Luke, and supportive family, we just got on with it because we had to. I immersed myself in therapy and making sure we could do everything and anything for Emily (and subsequently Reese). Being busy kept my mind active and stopped me from dwelling too much and falling in a heap. It was my coping mechanism. We had amazing therapists in early intervention, who really showed us how to integrate therapy into everyday life. Every activity, every action, every moment is a type of therapy for Emily. Emily, even to this day, doesn’t see therapy as ‘therapy’. She really does enjoy every minute of her therapy, even when it is tough for her. The Epilepsy (although not a surprise) appeared when Emily was three and we managed it initially with medication, strict sleep routines and management of illness as these were all of her triggers. We have been without medication for the last two years and she has remained seizure free – yay! I think the main way we deal with Emily’s CP is with a positive “can do, let’s give it a try” kind of attitude. We make sure Emily always attempts to do everything herself (even when it is quicker or easier for me to do it for her!). The look of satisfaction and pride when she achieves this is priceless. Consequently, we never hear Emily say “I can’t”. She might say “this is a bit hard for me” but she never stops trying and for that we are very proud of her. School age intervention now takes place at school, which is fantastic as it means Emily doesn’t miss school anymore because she LOVES school. The school and therapy team have a great working relationship, which is really important for Emily. We are so lucky to have a wonderful school that supports Emily so very well.

Reese had heart surgery when she was a one-year-old to close a patent ductus arteriosus (PDA), which had not closed at birth. We were lucky that we managed to get her to 8kg so that she could have the surgery done via a catheter up her femoral artery as opposed to open heart surgery. She has had no complications since and her heart has all returned to the normal size and been given the all clear! Reese’s diagnosis of Cerebral Palsy came at four years of age. I had noticed she was incredibly clumsy in comparison to her friends and even Emily! I saw Emily’s neurologist and I said to him that I was concerned that either Reese had developed a brain tumour or she had Cerebral Palsy. After an MRI and a physical examination, it was revealed my suspicions were right and she did in fact have Cerebral Palsy. This diagnosis actually didn’t bother me at all. I think because I already knew what Cerebral Palsy meant for her and how it affected her. I was actually so thankful for the diagnosis as it meant she would be eligible for services. Having a diagnosis just makes all the difference in our health and school system. Due to their prematurity, Reese suffered badly from respiratory issues and was always very sick over winter in those early years. She was hospitalised numerous times with bronchiolitis, pneumonia, bronchitis and asthma. We manage her asthma really well over winter with medication. Last year we managed the whole winter without a single cough or cold and not one hospital admission! Reese manages her hearing loss really well. She wears a small hearing aid in one ear that is a FM system and the teacher wears a microphone. Reese is responsible for looking after and ensuring the unit is charged and that her hearing aid is cleaned and has a new battery. We have good ‘hearing’ strategies in place in the classroom and it is all working really well.

SPRING 2016

then that is our favourite place! We have explored lots of Western Australia. We have travelled as far south as Esperance right up to Broome and lots in between! We are currently planning a trip to Ayers Rock and up to Darwin sometime this year.

Our favourite family activity: Currently our favourite family activity would have to be going to the football as a family. I am not footy mad like the rest of the household but I figure if you can’t beat them, join them! Our eldest son, Justin, plays football. He is a part of a fantastic ‘A Grade’ team at North Beach and we are at the Football Club on a Tuesday and Thursday (training for Justin), Wednesday (training for Reese), Friday (Girls League for Reese) and Sunday (games for Jack and Justin). The reason it is our favourite family activity is that everyone loves going to the football, even me. I have made some wonderful friends and really love their company. Justin, Reese, Emily and Jack have a beautiful group of friends and consequently spend all their time playing and socialising (if not playing football themselves) and Luke is in his element getting to watch and be around football just about every night of the week. Most importantly we are a part of a wider community, which is really important to us.

Jack: Jack was also born prematurely at 35 weeks. He spent 10 days in NICU before coming home. His prematurity is most likely the result of his respiratory issues and he, like Reese, has Asthma. While he hasn’t had as many respiratory infections and hospitalisations as Reese, he has had more hospital admissions with his asthma. He pretty much has the same regime as Reese over the winter period. Mostly I find now the hardest part is managing four kids, with lots of after school sports and activities! I am pretty much a taxi during the week after school but somehow we have managed to fit it all in. The kids have also had to learn that the world doesn’t revolve around them, that sometimes they can’t do something because their brother or sister has something on and that they more often than not have to sit, watch and support one another. A good lesson to learn we think! Mostly though, we manage all of this because we have to. It is what it is.

Our favourite places to go as a family is: We love exploring and camping. We started off with a tent and purchased a caravan when the girls were about six months old. We love heading off somewhere different each time, so long as we are all together as a family,

Our biggest challenge is: To be honest I think our biggest challenge is juggling four kids and their individual needs. It is a juggle sometimes to fit in everyone’s afterschool activities, appointments and therapy but we manage. We are very careful of making sure that all four have equal ‘special time’ with us, either together and/or individually. We make sure one of us (or their grandparents) are always available to attend assemblies, football matches, music lessons, and special days. Having extended family is very important to us and we make sure our kids spend time with both sets of grandparents. The kids’ grandparents also come in handy with some of our juggling and babysitting!

Best Parenting tip; Probably ‘Pick your battles’. Sometimes it is just not worth it. With four busy kids, disability and life in general, worrying about the small stuff takes up too much time and energy. There is no point in worrying about what you can’t change. Focus on what is really important to you and your family (and what works) and work with that.

SPRING 2016

The best/most useful advice we’ve been given: “Don’t forget to treat her like a child. Love her, let her play and enjoy every bit of her childhood.” Therapy is a HUGE part of Emily’s life. It occurs on a daily basis with every activity she does and then of course intensively during ‘therapy sessions’. It can be overwhelming and incredibly intensive (especially in those years of early intervention) and it’s easily the most regularly scheduled appointment in our calendar.

siblings. I also knew that if I wanted my daughter to never let her disability stand in the way, know that she could do anything or be anything she wanted, then I too had to believe that. I had to help remove those barriers. How could she ever be positive about her life, her disability, if I wasn’t? It was from that point that I accepted “it is what it is” and embraced her disability. It was from that point that I loved her completely. I loved every bit of her, disability included. Just some of the things we have we learned are: 1) We are stronger that we ever imagined.

There is, however, a fine line between therapy and too much therapy. Having time to be an ordinary child, where not EVERY toy or activity is therapy related is really important. The girls (especially Emily) need time away from therapy, therapists and hospital to play and have fun.

2) We can successfully wear many hats – parent, advocate, carer, teacher, nurse, OT, Physio, case manager. Talk about being multi-skilled!

It is so important for us that Emily is able to look back in 20+ years and have the same childhood memories as her brothers and sister. I don’t want her to have missed the opportunity to simply be a child because she was so immersed and busy with her therapy. Therapy free days, AFO free moments and staying in pjs until dinnertime, is equally as important as therapy itself.

4) We get to experience and cherish milestones that others take for granted.

The most annoying/unhelpful advice: When it begins with something like: “My sister’s husband’s brother’s cousin has Cerebral Palsy and...” you always know that it is going to be not only annoying but also unhelpful. I also absolutely hate the: “oh… such a shame” or “poor little thing” comments being directed at Emily.

This journey has taught us: This journey has taught us so many things. To be honest when we heard the initial diagnosis of a lifelong disability, we were shattered, heartbroken and terrified. It was hard to process and it was not the life we had wanted or imagined. Looking back now I realise that I had an intense period of grieving – for what I had lost or imagined I had lost. While Luke grieved, he was also incredibly strong for the pair of us and said very early on that he would rather have Emily with a disability than not having Emily at all. It took much longer for me to feel this way. I wasn’t sure that I would be strong enough, brave enough or good enough to be the mother of a child with a disability. I was scared that I would always feel so heartbroken when I looked at Emily and I wondered if there would ever be a time when I wouldn’t feel so broken and shattered. The turning point for me personally was when I realised that I never wanted my daughter to look back on her life and feel sadness and grief that her disability had been a burden to herself and also to Luke, myself and her

3) We have a true understanding of what perseverance, determination, acceptance, tolerance and inclusion means.

5) We get to experience the most amazing feeling of joy and pride when Emily accomplishes something her disability says she shouldn’t – it’s like having a front row seat in watching a miracle. 6) We have learnt to coordinate therapy into daily life yet balance it with a ‘normal’ childhood.

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7) We live positively, we have a good life and it just happens to have disability in it. There will be bad days but they will be overshadowed by all the good days.

People/Businesses we love

8) We have met the most amazing people because of disability and we are so grateful for them.

• Hearing: Australian Hearing

9) We have been able to be role models, mentors and help others who are just beginning their journey.

• Physiotherapists (Private): Triston Hunter (Step Ahead Physiotherapy), Janine Spiby

10) Finally, and probably the most important one - we have discovered that we didn’t actually ‘lose’ anything with her diagnosis, we have actually gained so much more.

• Paediatrician: Dr Paul Wallman

We would never manage without: • Pram: Phil and Teds’s Vibe (double kit) • High Chair/Chair: Stokke Tripp Trapp Chair • Walking Frame: Wenzelite Nimbo • Crutches: Coopers Crutches • Orthotics/AFO’s: Orthotic Prosthetic Solutions (OPS) and Interface Orthotics • Socks: Emily lives in knee-highs, so we have quite the collection. Right now our favourites are from Pride Socks, Paperwings and Oobi.

• Asthma: Asthma Foundation of WA

• Vision: Dr Lam, VisionWest

• Ear, Nose and Throat Specialist: Dr Phillip Fisher • Hospital: Princess Margaret Hospital (especially the CP Rehabilitation Team with our favourite Doctor Hutana) • GP: Dr J Setiwan (A GP who gets disability and who understands that a parent is a child’s best expert) • Retail: Paperwings, Betts Kids Shoes, Pride Socks, Little K Bows, Alex & Ant, Rock Your Baby, Archie&Evie, Poppy&Flynn, Mini Marche, Momes, Oobi, BebeandSi, ZahliPetite, Critterz, Daniel Ink, Target • Mentor: Robyn Lambird • AdInclusion: Starting with Julius • Sport: Disability Sports Australia, Fierce4Rugby

• Glasses: Spectacles 2-4-1

• Coffee: Passione Gourmet Deli

• Therapy Providers (Physiotherapist, Occupational Therapist, Speech Therapist): Ability Centre, DreamFit, CPTech

• Charity: Telethon • Photographer: For believing in Emily – Stefan Gosatti

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SPRING 2016

HOME SAFETY Feature

Safety As 2015 drew to a close, I declared to all who would listen that 2016 was going to be my ‘Year of Ease’. 2015 had been a particularly challenging year (one I like to call my ‘Year of Growth’) and I think many who heard my proclamation nodded their heads, sagely, and possibly thought “yes, she really does deserve a break” and “ha – she’s delusional”. By ‘Year of Ease’, however, I didn’t mean ‘Easy’. That may have been a little optimistic. My life isn’t easy. Your life isn’t easy. On this special needs parenting merry-go-round, there are challenges, small and big, every day that can knock us to our knees. What I meant by ease was finding the flow, the path of least resistance. Not sweating the small stuff. Acceptance. All great and wonderful words and phrases to discuss in theory. In practice, what does that look like though? When I started putting together this home safety feature, I realised that this is the actual epitome of my ‘Ease’. Think about it. Home. The place where you can kick off your shoes at the end

Manage the risks –

easy ‘at home’ adaptations If you are looking for an easy way to bump up the safety of your home without making any massive structural changes or spending a fortune, this is the article to read. The market is full of ingenious ideas to help keep your child out of danger and your heart rate at a regulated pace. Guaranteed (almost).

Additions for your house Lock ‘em in – door knob protectors: These are quite possibly my favourite things. It’s the little things in life. Last Christmas holidays, quite out of the blue, Amy suddenly realised that she could open doors (they are all door knobs) and go on little adventures – out the front door. I’ve also put them on the door to her sister’s room, so she can’t go in to wake her up first thing in the morning and on my study door to prevent her from eating my handwritten notes. Priceless. Cover/Guard/Protect/Shield it: If you baby-proofed for any of your children you’ll have these covered. Covering spaces that little fingers might like to explore is so worth it. Alarm it: If the door knob protectors, safety gates and window locks aren’t working any more, or you think they may be breached, or you just like to be extra-sure, you can invest in window and door alarms. These great products sound, you guessed it, an alarm when the window or door is opened – so you don’t have to keep on high alert at all times.

SPRING 2016

in the home of the day, shed any masks you still feel the need to wear, allow your inner geek/karaoke champion/fish wife out. It looks like you, smells like you, feels like you. It reflects who you are in all your ‘collection of Star Wars memorabilia/ way too many soy candles/half completed shabby chic cupboard restoration’ glory. But what if your home isn’t actually safe? What if the one place you are supposed to be able to be completely relaxed is anything but? We are all aware of some of the potential safety risks a home can present when we have a baby or toddler in the house. A good portion of us probably even made some attempt to ‘child-proof’ our homes to some degree – a temperature control on the tap and electrical socket covers for example. I think I remember a friend who had special little rubber corners on her sharp dining room table. As the toddlers grew and began searching for bigger and more exciting ways to potentially risk life and limb, the basic household dangers presented a good deal less risk and the protective measures relaxed somewhat. With our

children with special needs, that is not always the case – and in many ways, as they age and grow bigger and stronger, they often become more of a challenge. We need, as parents, but also as people, to be able to have a space where we can unwind. Being constantly on high alert in case something may happen to your child in your home is not congruent with that – or with my ‘Year of Ease’. Creating space where we can all be safe and calm is paramount to a journey that is less reactionary and more enjoyable, which may sound like a lofty goal but is certainly one I am aiming towards. So what does that look like? Everyone reading this article is coming to this from a different perspective, with different children (of different ages, with a massive range of special needs) in their care, at different stages of their lives, with different budgets, wants, and needs. We have looked for ideas and tips to help you make your home safer, how to be prepared if there is an emergency situation, first aid and some great products on the market that could be life-saving (a smoke detector for the hearing impaired, people!). ‘Ease’ never looked so, well, easy.

Gate it – safety gates:

Attach it:

It really does depend on your child and their disability as to the length of use you’ll get out of the standard baby gates. They can be absolute gold for those safety/danger hotspots like the kitchen, or the top of the stairs. Some manufacturers are making taller versions and you can also buy retractable ones, for days when you don’t want to have to make the grandparents/guests step over gates to get into the kitchen. You can also have a look at full sized screen/security doors in hotspot areas.

If you can, lock it down (or up). TV straps, bookcase harnesses and cabinet locks are essential if you have a climber, an inquisitive soul or just someone who likes the idea of cracking open the knife drawer, glass cupboard and/ or pulling the flat screen on top of themselves. They don’t bounce. If you can’t shut off the bathroom with a safety gate, toilet seat locks are also a really great idea – if you can get the men in the house to put the seat down.

Surround them:

If you have a child who requires power at all times, the Telsa Power Packs are pretty incredible. They switch on automatically when the electricity shuts off and run from stored solar power.

Everyone needs to be able to get some sleep but for some children, staying in their bed at night can be a massive challenge. Products like the Safe Surround Bed from Medifab can keep your child safe in their bed all night long and unable to wander the house. Monitor it: You can keep using a baby monitor or upgrade to a camera. There are different versions available, including ones with infrared scanning. Using monitoring equipment and seizure alert systems for children with Epilepsy is also very possible.

Power it:

Bumper it: Who doesn’t love a good foam mat? Creating a space that children can throw themselves around, or under a swing or cubby – or even just beside the bed in case of a middle of the night tumble. If only you could wrap the foam around your child for life. We love the foam equipment from Hart Sports.

Be a Quell kid and help Captain Quell spread the message of fire safety. Captain Quell has some great advice for families to help protect your home and family. Visit quell.com.au to find out more.

QuellÂŽ is a registered trademark of Chubb Fire & Security Pty Ltd

SPRING 2016

HOME SAFETY Feature

First Aid in the home

In case of emergency, the way you react can make the difference between life and death. No pressure. Being able to have the skills to manage a range of emergency situations as a reflexive skill is only possible when you’ve had some training. This really isn’t the time for google. All parents find themselves in sticky situations, dealing with broken bones, blood and breathing issues at some stage or another (usually at night) but when you have a child with special needs, the risk of real health complications are so much higher. If you, or someone you care for, has a disability and/or health complications, you need to make sure you are prepared.

Take a course We have a great fact sheet with the basic life support procedure to follow in case of an emergency for you to cut out and put up on your fridge for future reference. This is absolutely no replacement for an actual course. The St John’s Ambulance service provide training courses around the country. Do yourself a favour and book into one.

Have a first aid kit Making sure that you have first aid equipment and a first aid kit in your home only makes sense. You can easily make one up yourself or buy one readymade. Go through the contents with other adults/older children living with you, and make sure you know how to appropriately use the equipment/products inside. Make sure you go through the kit every few months to make sure nothing has expired and the torch battery is still working. Keep the kit out of reach of children and locked if it contains medication.

A first aid kit should contain: • Various bandages, gauzes and dressings including: - Bandaids in various sizes for minor cuts and injuries - Non-adhesive dressings for burns and scraped or grazed skin - Wound dressings to help control bleeding/ reduce infection risk - Crepe bandages to hold dressings in place, reduce swelling and provide some support - Triangular bandages for slings and to hold splints in place • Various adhesives including: - Safety pins - Tape • A splint • Tooth preservation kit • Mouth guard for administering CPR • Non-latex gloves • Eye drops (to wash small objects like sand, dust or insects from the eye) • Saline solution • Alcohol wipes • Cotton wool swabs • Disinfectant • A small torch and spare batteries • A small, sharp pair of scissors • Tweezers • Thermometer • A space blanket • Instant cold packs • If you choose to keep pain relief and antihistamines in your kit, make sure the kit is safely locked and cannot be accessed by small children • Note pad and pencil • Emergency numbers and a first aid guide book

000

Teaching our children, if they are at all able to, to be able to call 000 in an emergency is essential. Teach them to: • Call 000 • Say which emergency service they require (police, ambulance or fire) • Give their name and address • Tell the operator what’s wrong • If the only adult in the house has had a serious accident, this is a life-saving skill • Go to www.kids.triplezero.gov.au for a great, fun, accessible way to teach children how to use our emergency services number

SPRING 2016

HOME SAFETY Feature

Basic Life Support Remember the DRS ABCD

D R S A B C D

check for Danger Make sure the environment is safe for you and the patient.

check for a Response Touch (squeeze shoulders firmly) and talk (“Are you ok?”, “Can you hear me?”).

Send for help Call 000.

open the Airway Use the head tilt and lift technique to open the airway. If airway is blocked, turn patient onto their side and clear their airway.

check for Breathing Look, listen and feel for normal breathing.

commence CPR If patient isn’t breathing, commence CPR. Give 30 compressions, followed by 2 rescue breaths.

attach a Defibrillator (AED) As soon as available and follow the prompts.

Continue CPR until the patient responds or normal breathing returns.

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SPRING 2016

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> Designed for 7 day standby > Xenon strobe light with wide angle light output > Vibration pad for use under a pillow or mattress (unit will alert user if the pad is unplugged or wiring is damaged with a flashing LED) > Additional strobes and vibration pads can be added for other rooms > Wall or surface mounting

SPRING 2016

HOME SAFETY Feature

Have you got an Emergency Plan?

It is important for all families to have an emergency plan in case of fire, flood or other disaster, which may require them either to evacuate their home; or remain within the home, unable to leave for an extended period. Sitting down and discussing evacuation routes, checking smoke detector batteries and ensuring torches are working are fairly standard practice. As with most things in the land of special needs parenting, that standard practice is probably not going to be quite enough when you have a child who has a disability. Children with special needs are particularly vulnerable in case of emergency and working out a plan can help to give you peace of mind and make sure you are prepared if the worst should happen. Obviously every person is different, so think about your particular situation and what would and wouldn’t work for you. Here are some tips to get you started: What would happen if someone other than you had to care for your child or take them to the hospital? How would they know how to care for your child? Have an emergency care plan laminated and readily accessible and include the following: • Your child’s diagnosis – and what that looks like for your child (e.g. non-verbal) • Allergies • Care requirements • Seizure plan • Medications (including dosage instructions) • Feeding schedule and instructions • Details regarding any equipment (e.g. size of adapter for PEG) • The contact details of his/her medical providers • Copies of Medicare card/health care card/health insurance cards • Any notes regarding special/unique care requirements (e.g. doesn’t like hair being brushed)

Have an emergency kit and keep spare equipment and supplies on hand and make sure to go through it on occasion to make sure it is all still relevant/sizes correct etc. It could include: • Medications: a box of each of your child’s medications with the necessary equipment to dispense it like syringes and make sure they stay in date. • Food: formula or blended food if tube fed, specialised food if on a diet (e.g. ketogenic), or special snacks/meals if they are very particular. Keep meals in freezer, in serving-sized amounts, and clearly labelled with contents, date frozen, date to be used by and amount. Put a note in both the emergency kit and emergency plan to alert the emergency care-giver as to their location. • Spare equipment for tube feeding and any other specialised feeding equipment (or drink bottle). • Nappies/continence equipment. • A spare of any special comforter, book and clothing. In case of a fire Be safe: Work out your evacuation procedure in advance. Make a plan: Using a floorplan of your house, discuss and draw out the evacuation plan and put it on your fridge. Make sure that one person is responsible for assisting your child with special needs. Make sure you have a backup person in case that person is not at home during the fire. If you are unsure as to the safest way to assist your child from the house, it is a good idea to speak to your local fire department to come up with a plan. Ensure easy access: Make sure all doors and windows can be opened and that any safety barriers you may have installed can be easily removed in case of emergency. Any locks need to have easily accessible keys. Practise: Run through the evacuation plan, making sure that everyone understands what they need to do and where they need to go. It’s a good idea to do a drill during

SPRING 2016

the night to see who will (and who won’t) wake up to the fire alarm. Warn your children that you will be having a drill – the surprise may frighten them otherwise and the drill is to see what it would be like having to wake to an alarm and move safely in the dark. The element of surprise is not necessary. If you find you have children who won’t wake to the alarm, you may need to amend the plan. Social Story: You may like to do up a social story for children who may not understand or find the idea challenging or frightening. Smoke detectors: Make sure you have working smoke detectors and check the batteries. If you have a child (or any person) with a hearing disability in your home, you can get a special kind of smoke detector from Brooks Australia (www.brooks.com.au) that, as well as sounding an audible warning, will activate a high intensity strobe light built into the control panel and a vibrating pad located beneath the sleeper’s pillow, to alert them of the danger. There is funding available to assist with the purchase of these alarms in most states (the way the funding works differs between states). The contact details for more information about each state’s program are as follows:

The Deaf Society of NSW: www.deafsocietynsw.org.au Vicdeaf: www.vicdeaf.com.au Queensland Fire and Rescue Service: www.fire.qld.gov.au Guide Dogs SA/NT Hearing Services: www.guidedogs.org.au Tasdeaf/Hearing Link: www.tasdeaf.org.au Independent Living Centre of WA Inc: www.ilc.com.au Evacuation Chairs: Evacuation Chairs are compact and foldable mobile chairs used to evacuate people with a disability down stairs. Evacuation chairs may be manual or have a battery powered motor. The chairs have wheels and rubber tracks, which allow for a controlled decent down stairs. Generally evacuation chairs have speed regulation devices and braking systems that control the speed of descent and have an additional brake when stationary. The seats have adjustable safety straps to secure the person to the seat during transport. Go to www.evacuationchairs.com.au for more information.

SPRING 2016

HOME SAFETY Feature

Michael Young

Internet safety

When it comes to ‘Stranger Danger’, we often feel wellresourced to protect our children. However, when it comes to internet safety, it’s hard to know where to start. A few years ago, you put some software on your PC and it was all sorted, but now kids have access to tablets, laptops via school programs, and sometimes even your own mobile phone. While you could just try to ban it altogether, the internet opens up a world of knowledge and education to children, so it makes sense to introduce safe technology practices early on to support their awareness in an ever-increasingly digital world. There are many cyber protections available that enable parents to make sure their children use the internet safely. Here are a few options. For younger children, you can change the default search provider to a child-safe search engine. All you need to do is change the homepage and search engine in your browser to any of the child-safe search engines. These engines won’t return a result if you search a suspicious or inappropriate keyword. I particularly like kidszsearch, which offers other safer resources like Kids Britannica for example. Some safe search engine examples include: www.kiddle.co; www.kidzsearch.com; and www.kidrex.org OpenDNS is another option. The internet is made up of a lot of servers and computers, which all connect with an IP address (such as 208.67.222.222). When we type www. sourcekids.com.au into our browser, the computer asks a Domain Name Server (DNS) to tell us where that computer is. By using OpenDNS in your routers settings you can filter the requests to make sure that some sites

can’t be accessed. The service is free: you just need to register an account, and change the DNS server on your device or router. On the OpenDNS website you can set web content filtering and you can also enable malware and phishing protection. It’s a good form of protection but it has its limitations because all devices are filtered. When it comes down to it, the kids are pretty tech savvy these days and will probably bypass these suggestions once they get to a certain age and ability. Once this happens, the best solution is to use a hardware device that acts as a router for your kids, but allows you to tailor each device for time, content etc. There is already a product called Parent Power (www.parentpower.com.au), which is a proxy server attached to your existing router, and this filters all web content because all traffic is routed through it. It’s quite expensive though, at $200 for the unit and then $20 per month subscription. A new product that is about to hit the Australian market, and which has been launched with great success in the UK, is Home Halo (www.homehalo.net). It’s an actual router, so you plug it into your existing modem, and the kids connect to the Home Halo WiFi. It searches all the devices on the network and filters it, so that can include consoles, tablets etc. and there is even an app so you can control it from your phone. You can also bypass the filtering for specific devices if required. The device is currently being tested locally for the Australian market and will be available around September 2016. Look out for the full review in the next issue of Source Kids.

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SPRING 2016

Starting with Julius

Love it or hate it, the role the media plays in our lives is undeniable. We are bombarded from the moment we wake up and pick up our phones to scroll through our Facebook feed, till bedtime and the last podcast we just have to finish. The articles we read, the television we watch and the advertising we see tells us, subconsciously most of the time, what our world should look like. Of course, if we think about it logically, the real world is actually quite different from the one portrayed in the mainstream media. However, that’s not usually the first thing we are thinking about when we stick the kids in front of the TV for a blessed half hour of peace while we sort out the dinner and get the laundry sorted, or leaf through the catalogues when working out the Christmas lists or spring wardrobes. The world we see on screen and in print media advertising is largely created by the advertising executives who have the job of persuading us, and our children, that the product they are trying to spruik is the one we absolutely need to have more than anything else. The shiny actors and models selling that product, with perfect teeth and glossy hair, show us our lives, only better, with the intention of implying that with said product in our lives, we too could be as happy. As glossy. Which is all fair and well, and the basis of our fair-market economy. And perhaps we really would be happier with a vacuum cleaner that’s able to pick up a bowling ball?

All jokes aside, what would happen, though, if whenever you looked in a catalogue, or watched an ad on television, you never saw a person who looked like you? Would you feel excluded? As though, perhaps, your existence was not quite ‘pretty’ enough? Or, worse, that other people didn’t realise you existed at all?

points physio Key to remember

• Accept the invitation (if your child wants to go!)

This was the issue facing the millions of people with • Ring the parent and do some gentle investigating. How many disability in Australia (and around the world). People who children are attending? What activities are happening? Is the had a disability were just regularly employed to work park, hallnot or home accessible for your child’s needs? What toilet advertising facilities are there, if required? Indoor rock climbing as part of mainstream campaigns.

time. Many a party for anyone is made memorable by leaving

beforeshould things turn Consider sleep times Catia says “Advertising beugly! bold and reflect thefor your child or or party food they can cope with. This world in which we how live.much Withstimulation one in five of us living with is true for all of us!!! disability, having a disability is a natural part of the human • Make sure that you can stay for the main event – cake cutting, experience and, like other forms of diversity, it should be puppet show, face painting! Explain to the host beforehand represented, not excluded. that you may not stay for the whole event. • Don’t be a helicopter parent! Let events unfold and watch

“As a parent, I felt strongly that children with Down from afar. Often another parent or child will step in to make Syndrome and other disabilities as much right,might in work better suggestions abouthave how games or activities for your child. developing their individual identities, to see others who Most of all – celebrate the event! share a common• experience or identity portrayed in a positive and inclusive manner in the and to As a parent of a child with media special needs, you can be a great • P in the tail on the donkey/ rabbit might be done sitting down or on a board that can be placed at different heights or on a wheelchair tray.

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parties for example, are not fun if you can’t participate.

Facilities may have harnesses and specialised As with most maligned groups in modified our history, it usually instructors. A conversation with the host asking about this is takes a few people on a mission to steamroll through the best done a week before the event, not as you arrive at the changes. One suchvenue! person is Catia Malaquias, mother of Let the host know if your child is super sensitive to noises, allergic to latex or certain foods. Julius (who has Down Syndrome) and founder of Starting with Julius. • Anticipate that your child might not need to stay the whole

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A b m p fo a b o w

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experience the self-validation and empowerment that can come from being represented.” Starting with Julius was established three years ago after Catia’s son, Julius, became the first person with Down Syndrome to feature in a nationwide, high profile Australian advertising campaign for eeni meeni mini moh. Catia says: “When Julius loved being on set and a ‘one-off’ became seven consecutive advertising campaigns for eeni meeni miini moh, I saw an opportunity to build on this experience to engage the Australian community, advertisers and retailers in a broader conversation about diversity and inclusion. From that Starting with Julius was born. “It was founded on the belief that regular commercial advertising and the mass media can be effective as a tools of cultural change. While we are not casting agents, we endeavour to assist brands and retailers to create more opportunities for representation of models with disability.” Starting with Julius has been involved with the recent Kmart and Target catalogues that have featured children with disability – including our cover model, Emily Prior and our travel/foodie columnist, Cooper Smith. You can go to www.startingwithjulius.org.au for more information.

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SPRING 2016

Managing Eating

Managing

eating

Long wooden tables, laden with platters of delicious food, fairy lights twinkling overhead, laughter and chattering carrying through the warm, jasmine scented air. That’s what family meal times looked like in my imagination. The reality? Not so much. Whether you are struggling to get your child to eat at all, or have managed to get through that hurdle only to have them eating spag bol with their fingers, we have the tips for you. We also have some fantastic ideas for fun, funky and functional mealtime equipment that may help to make the whole process slightly more appealing. Fairy lights and misty imaginings not included.

OT tips: managing cutlery foods with a fork. It’s helpful to introduce cutting outside of mealtimes. For example, cutting play dough sausages (start with ‘thin sausages’, make them ‘fatter’ as skills develop) or cutting lettuce and tomato for a salad. At this stage, one hand holds the food/play dough, the other does the cutting (leave the fork out of the equation initially).

Mealtimes are tricky! Not only do we want our kids to eat the right foods and try new foods without an argument but we want them to eat nicely with cutlery, cope with the social components of mealtimes AND be grateful to the cook! Consider the following when supporting the development of your child’s skills using cutlery:

Your child’s age. As soon as your child can maintain their sitting balance in a high chair and is enjoying soft foods, it’s okay to give them a spoon to play with and start to ‘dip’ if you want them to. At this stage it’s more about how much mess parents are happy to accept! Between 18-24 months most children have the skills to feed themselves a meal with a spoon. Remember to have your child well supported – in a highchair initially, then with feet well supported rather than just hanging, in a booster type seat so the table is at elbow rather than chin height!

Adequate fine motor skills and bilateral hand skills (use of two hands together) are necessary for managing cutlery. Introduce the spoon first – just dipping in puree (e.g. thicker yoghurt, mashed veg) and getting to the mouth is a good first step. Don’t use anything too runny as in the first stages your child WILL tip the spoon over – better if the food sticks to the spoon! Of course at this stage the adult will still need to have a spoon and be feeding your child too. From there try ‘poking’ firmer

What type and size cutlery? I prefer the Tommee Tippee ‘My First Cutlery Set’ range of children’s cutlery, as they have specially moulded handles with a clear place for the index or pointer finger to sit. This range, however, is not great for cutting firmer foods, so consider a different knife for things like the salad tomatoes. As you transition your older child to ‘grown up’ cutlery at around six or seven years old, try putting a sticker on top of the handle, to give the same idea of where the index finger goes.

Motivation. Pick your battles. If you have a child who is a super picky eater and you’re trying to develop their skills in eating a range of foods, it’s not the best time to be worrying about cutlery use. In fact, sensory exploration of food with hands is important in the beginning. It’s time to challenge children to use cutlery for a few soft foods when they are motivated and happily eating. Robyn Duregger - Paediatric Occupational Therapist and Clinical Director North Coast Therapy, Sunshine Coast QLD www.nctherapy.com.au www.facebook.com/nctherapy

SPRING 2016

Tips to overcome

fussy eating in children

Make sure your child is well supported when eating Your child’s feet need to be flat on the floor or a foot rest, with their elbows resting comfortably on the table. You may need to use a step or box as a footrest and they may need to use a booster seat to make them high enough to reach the table. If your child’s posture is well supported they can concentrate on using all the muscles in their mouth for chewing and swallowing. One swallow requires the coordination of 26 muscles, six cranial nerves and all seven sensory systems!

Eat with your children When possible try to have one meal a day where at least one adult sits and eats with the children whilst talking about food and daily life. Avoiding distractions like TV, devices or toys will ensure children can focus on the skills involved in eating. Research demonstrates that children are more likely to try new foods when eating with an adult.

Everyone should have the same food on their plate Make sure that there is a safe food for everyone. For example, if your child will only eat plain pasta then everyone at the table should have a serving of plain pasta. Some people may have a smaller serving and some may choose to mix theirs with sauce. If Dad likes broccoli then everyone gets a serving of broccoli. Your child might not eat that food but this provides an opportunity to learn about it. Talk about why food is good to eat, “It tastes so sweet!”, “It is so juicy”, “It has lots of vitamins that stop me getting sick”, “It will give me strong bones”. You can set kids the rainbow challenge where they have to eat a variety of different coloured food each day. Try having a rainbow as a placemat or stuck on the fridge to help with this.

“I don’t like it!”, “I hate that food!”, “It’s disgusting!” Try reframing these statements to something more helpful like “It must be a food you’re still learning about”. It is also helpful to ask children questions about food to help them learn. For example, ask them how a food looks, talk about the colours, how it feels, if it is slippery, crunchy or juicy. This encourages children to develop the confidence to explore food. Children can start learning about food when you are preparing dinner. Have them wash vegetables, toss salads or cut simple vegetables using safe knives like the Kiddikutter.

Play with your food Children learn through play. Dr Kay Toomey and Dr Erin Ross (SOS approach to feeding) talk about the 25 steps to eating, which start with being in the same room as a food, tolerating the food being on your plate, smelling the food and touching it with the tip of your finger. The best way to help a child move up the steps to eating is through play. Offer some dips and vegetable sticks for afternoon tea. You can paint your plate using the dip as paint and veggies as paint brushes, or even paint your fingernails. Before you know it they will be pretending to paint their teeth with veggie sticks and dips.

You don’t have to eat everything on your plate Ellyn Satter is a paediatric dietitian who talks about the division of responsibility. The parent is responsible for what food is served, when it is served and where it is eaten. Your child is responsible for if they eat and how much. Imagine if you were in a foreign country and were told if you order the snails you have to eat the whole plate. You would be unlikely to order it, however if you could start by having a nibble you may be more inclined to try it. There will be food your child eats lots of, some they nibble at and others they may just smell, poke or kiss goodbye. This is okay, children will slowly learn to try new foods when they are offered in a safe predictable environment. If your child has less than 20 foods and or eliminates whole food groups consult your GP. An Occupational Therapist or Speech Therapist with experience in paediatric feeding may be able to support your child to develop skills with eating and provide practical strategies for easier, happier mealtimes. Rene Fraser – Senior Occupational Therapist Therapies for Kids, Sydney NSW

SPRING 2016

Managing Eating Neat Zeat from Medifab

Rifton Hi-Lo Activity Chair from Special Needs Solutions

Family time, feeding and play the Neat Zeat offers a modular indoor seating solution for activity, feeding and learning opportunities. Constructed of durable hardwood with a lacquer finish, it is height adjustable and provides a large growth range.

The Rifton Hi-Lo Activity Chair provides stabilisation at the feet, hips, chest and head areas to enable its user to focus on feeding and swallowing. An incline of the chair forward and back is a valuable feature, tilting the feeding chair reduces the risk of aspiration. This positioning chair has revolutionised active seating.

www.medifab.com.au

www.specialneedssolutions.com.au

Special Tomato Soft Touch Booster Seat from Dejay Rise to independence – this booster seat includes a 3-point safety belt, height and pelvic stability as well as sacral and lateral thigh support. It is easy, portable, colourful and soft to touch.

SEATING & POSITIONING Products

www.dejay.com.au

Special Tomato HI-Lo MPS seating system from Special Needs Solutions This seating system is height adjustable and allows for growth. You can also ‘tilt-in-space’ with the child in seat and it is adjustable with floor to dining table height with contoured cushion support and an ergo harness design. The back cushion and footrest are also height adjustable, and have contoured head support. www.specialneedssolutions.com.au

The chair that

This classic iconic wooden high chair From birthby makes everyday moments last forever, Tripp Trapp®

0-6 months

bringing your child to the table and closer to the family. It is highly adjustable in seat and footplate positions, has a 5-point harness grows with the child.™ and optional extended gliders to provide backward stability.

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6-36 months

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Stokke Tripp Trapp Chair from various stockists across Australia

SPRING 2016

Evo OTware Cutlery from Skillbuilders RRP $29.95

EZPZ Happy Mat from Children’s Disability Products RRP $36.95 The Happy Mat is an all-in-one placemat and plate that captures kids’ mess and suctions directly to the table to avoid it being thrown!

Easy to grasp, easy to hold and easy to control! These unique utensils for children and teenagers have been carefully and ergonomically designed to enable independence in eating.

www.childrensdisabilityproducts.com.au

www.skillbuilders.com.au

Dinner Winner from The Bento Buzz RRP $29.95 The Dinner Winner makes food fun and helps to take the difficulty out of mealtime with fussy eaters. www.thebentobuzz.com.au

Incurve Plate Surround from Aidacare RRP $19.64 A versatile plate guard quickly attaches to any standard dinner plate to assist with one-handed eating and prevents spillage.

Easie Eaters from The Therapy Store RRP $15.95

UTENSILS & CUTLERY Products

EasieEaters are specially designed by an Occupational Therapist. These angled utensils promote greater success with hand-to-mouth feeding and the built up handles make them easier to hold.

www.aidacare.com.au

www.thetherapystore.com.au

Junior Caring Cutlery from Linds Rehabilitation RRP $16.80 each These stainless steel utensils are moulded into contoured, plastic handles with built-up ends.

Food Cubby Dividers from Sensory Oasis for Kids RRP $8.95 (single) A plate divider to separate food, portion control and get food onto utensils easily. www.sensoryoasisforkids.com.au

www.lindsrehab.com.au

The Right Bite from Skillbuilders RRP $10.50 This is a great invention for children with feeding difficulties. Sometimes the ability to visually judge food and take an appropriately sized bite can be a difficult task. These children tend to ‘stuff’ their food into their mouths. The Right Bite solves this problem by allowing you to present a prescribed, manageable amount of food to the child. www.skillbuilders.com.au

SPRING 2016

Managing Eating

Making mealtimes fun At around 18 months to two years of age, many children enter a period of ‘selective eating’, which is coupled with the development stages of forming a sense of independence, wanting to self-feed and neophobia (fear of ‘new’ foods). Growth of children in the second year of life slows, comparatively to the first year and hence the eating pattern of children often slows down. Parents often panic when this begins and try to force children to consume more as they worry about lack of adequate nutrition. If the child resists, this pattern can lead to the development of picky eating and distrusting a child’s internal appetite regulation. Eating is a learned skill and takes time, patience and practice to develop. Children learn about eating through constant exposure (sometimes up to 30 times before acceptance), systematic desensitisation and engaging trust without feeling forced to eat. Problematic eating is often caused by an undiagnosed gastrointestinal issue such as reflux, constipation, allergy or intolerance. Often children who present with feeding issues have had a difficult start with feeding via breast/bottle or introduction to solids. Negative feeding experiences, which induce high amounts of stress or pain, can increase adrenalin and turn off hunger and appetite cues. If this is reinforced with every meal time due to concerns such as pain from reflux or poor muscle tone with chewing/swallowing this can lead to a negative association with feeding before the food is even on the table. I am often asked “How do I know my child is getting enough nutrition?” As each child has their own unique nutritional needs, monitoring a child’s growth via a growth

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chart is one indicator of adequate growth for them. A drop or increase of more than two centile shifts can often indicate an underlying issue. Scheduling meals as much as possible and minimising grazing assists in making children aware of their hunger/fullness cues. Including nutritious foods across the day and monitoring food intake over the week as opposed to daily is more reliable in ensuring your child is meeting all of their core food groups. Tips for promoting a supportive feeding environment: • Ensure all other causes of feeding difficulties have been ruled out by your Paediatrician, paediatric Speech Pathologist, Occupational Therapist or Dietician. • Provide opportunities for modelling and learning to eat through family meals. • Recognise that each child is uniquely different and may have strong sensory preferences, which greatly impact on feeding (touch, taste, smell, sound, appearance) and food acceptance.

Feeding is a complex area, which utilises other allied health professionals such as Speech Pathology and Occupational Therapy. I strongly recommend that if your child is exhibiting difficulties with feeding that you engage allied health professionals who specialise in paediatric feeding. Zoe Hutchinson - Paediatric Dietitian Little Sprouts Nutrition Sunshine Coast, QLD www.littlesproutsnutrition.com.au

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SPRING 2016

FOOD IDEAS Easy-peasy pancakes

to be cooked first) and then a spoon into the gloop. They may even eat some. For a cool treat, put yoghurt into a piping bag and pipe small ‘drops’ onto a lined baking sheet. Pop into the freezer until frozen. Put drops into a bag and store in the freezer. These icy, yoghurt treats are fun to eat and cool against teething gums. They also add a different texture.

Dairy, gluten and refined sugar free, and only two ingredients? Surely it can’t be that easy to be so virtuous? These ‘magic’ pancakes are a win for mum and kids. Just don’t eat them all yourself! What you need: 1 very ripe banana (as they are easier to mash and sweeter) 1 egg Coconut oil for frying What to do: Mash banana until smooth. Whisk egg. Combine and mix together well. Heat coconut oil in frying pan over a medium heat. Add one tablespoon of mixture for each pancake. Cook on each side for approximately two minutes (until golden brown on each side). Serve immediately. Makes about 10 small pancakes.

Smoothies and smoothie icy poles Look, obviously you clever and super brilliant mums (and dads) out there are a million times better than I am at convincing children to eat all their greens and micronutrients every day BUT if you need a day off from your super-parenting ways you could try adding tons of healthy veg into a delicious smoothie. What you need: A liquid: water, coconut water, milk (coconut, almond, rice are all great dairy-free alternatives) Fruit and veggies: spinach, avocado, kale, beetroot, carrots, cucumber, apple, berries, banana Flavours: nuts, cinnamon, seeds, yoghurt, honey, cacao, ginger, herbs, maple syrup What to do:

Fruit and yoghurt Make sure to use full fat, plain dairy or coconut yoghurt. Your child can have fun putting his/her hands, fruit sticks (use soft fruits like peach or watermelon that don’t need

Blend it. If you make it a bit thicker (add less liquid) it can be a fun finger/first food to practise eating with a spoon. Freeze it. If your child struggles with the texture of a smoothie or you feel like a cool treat, try freezing the smoothie mixture in icy pole moulds.

SPRING 2016

Rare Disease in Profile

CHARGE Syndrome CHARGE Syndrome is a rare disorder that affects just one in 10,000 people. Director of outreach at the CHARGE Syndrome Association of Australia and New Zealand, Rob Last, reports there are around 300 families in Australia who have a child with CHARGE Syndrome - ranging in age from recently diagnosed through to 33 years old. CHARGE stands for Coloboma, Heart defect, Atresia choanae (also known as choanal atresia), Retarded growth and development, Genital abnormality, and Ear abnormality. Even though a gene for CHARGE Syndrome has been discovered, the gene test is very expensive and isn’t perfect - only about 2/3 of people with CHARGE have a positive gene test. Therefore, the diagnosis of CHARGE Syndrome is still clinical – based on the medical features seen in the child. The clinical diagnosis is made using a combination of Major and Minor features, which can be found via www.chargesyndrome.org.au

If a picture tells a thousand words then this beautiful image of Will and Emmie de Oliveira encapsulates all of life’s enjoyments and challenges in equal measure. The St Kilda three-year-olds are twins, born on Anzac Day. The sheer joy of giving birth to son and daughter, Will one minute before his sister, was somewhat overshadowed for first-time parents Kathy Bodycoat and Andrew de Oliveira, when it became clearly evident that Will was facing a number of medical complications. Will was born with a significant bilateral cleft lip and palate and four months later it was determined that he had CHARGE Syndrome, a rare disorder that arises during early foetal development and affects multiple organ systems. Kathy remembers that at the usual 20-week antenatal scan nothing abnormal was detected, although, she says that had the severity of his symptoms been revealed, it would not have made a difference. “Except to make me more anxious than I already was,” she admits.

Between 70-80 per cent of children also have what’s commonly referred to as a `typical CHARGE’ face, which includes a square face with broad prominent forehead, arched eyebrows, large eyes, prominent nasal bridge and thick nostrils, flat midface and small mouth and chin.

“We’d had a very long and emotional journey to have a baby.”

“It is a complex and challenging condition for families, medical professionals, therapy professionals and the educational teams involved,” Mr Last said.

“At birth, Will’s clefting was very obvious and confronting - the paediatricians initially thought it was an isolated issue and not part of a syndrome but this was not the case,’’ recalls Kathy.

“The outcomes for those who have CHARGE ranges from those who are functioning at a high level (reaching university levels in education) to those who are fully dependent in daily living. “In my experience, they are a most interesting group often possessing a delightful sense of humour, are most engaging and enjoying life to whatever level they have attained.”

Expecting no major surprises on delivery day, except of course for the inevitable and mostly loveable chaos that a multiple birth brings, the couple’s life was instantly changed in a manner they least expected.

“His cleft lip and palate were surgically repaired when he was small but he also had significant respiratory issues and difficulty swallowing. “I think the Royal Children’s Hospital doctors initially made the diagnosis based on the appearance of Will’s ears and the diagnosis was confirmed when he was about four months old via genetic testing. There was a mutation to the CHD7 gene.”

SPRING 2016

CHARGE stands for the different features of the onein-10,000 children born with the syndrome (see info box on left). Will has most of them, as Kathy details here: • Coloboma - in his left eye, which doesn’t impact his vision (so far). • Heart defects - Will was born with an ASD, which spontaneously closed but he also had a sub-aortic stenosis, which caused him to have a cardiac arrest in October last year. The stenosis was removed in open heart surgery and he was on extreme life support for 10 days. • Choanal Atresia - connected to swallow ability. • Retarded growth and development. • Genital abnormalities - Will has a high likelihood of requiring testosterone treatment. • Ear abnormalities - hearing loss and balance problems. “He breathes through a tracheostomy tube and is totally PEG-fed. His physical development is also delayed but he’s now crawling really well and getting close to walking,” Kathy reports. “He is profoundly deaf in his left ear and has moderate hearing loss in his right ear.” Will’s routine now includes a ‘fabulous’ Mainly Music activity on a Monday morning and a ‘very special’ playgroup with RCH-trained carers on a Tuesday. On average he has one to two medical appointments each week ranging from hospital visits to sessions with a Physiotherapist, Ophthalmologist, Noah’s Ark early intervention and Australian Hearing. The future medical needs of this Thomas the Tank Engineloving toddler are an unknown quantity. “Will’s challenges are pretty extensive but we’re told the first few years are the toughest,” Kathy explains. “He still needs to learn how to walk, eat and talk, which are obviously major milestones. “It sounds like there’s a big range in terms of how CHARGE impacts each child and it’s just a matter of waiting to see how Will progresses. We hope that some (actually many) of his issues will resolve or improve as he grows and gets stronger. “Only time will tell.” To say their journey with Will, while enjoying and embracing the milestones Emmie reaches, has been a challenge, would be an understatement. “It has been extremely challenging and anxiety provoking at times but also joyful and we feel really lucky to be parents to two gorgeous children,” she says.

“I struggle with Emmie doing certain activities that are challenging or impossible for Will (like swimming, playing in sand, starting school) but realise she needs to have the chance to do these things. “We wouldn’t have managed so well without the support we have - from our family (especially the loving and dedicated grandmothers `Mee-Ma’ and `Fofo’), the RCH Complex Care Service and the support workers and nannies - especially Tulleah who has been with our family since we first took Will home from hospital and is undoubtedly Will’s favourite person in the world!” Kathy reports that Emmie’s health has been as straightforward as Will’s is complex, but that doesn’t mean she and Andrew don’t fear for her development in other, less obvious, ways. “I worry about how Will’s issues impact on Emmie and try to make sure she receives lots of attention too. It’s particularly tough during Will’s long stints at RCH - we’ve had a regular nanny to focus on keeping Emmie busy,” Kathy says. “I’ve always thought Emmie will be Will’s greatest asset as he looks at how she does things and tries to do the same. “I’m currently looking at kindergarten options for next year and hoping that Will can do a combination of mainstream kinder with Emmie and also continue with his special needs playgroup and possibly kinder separately.” And in the meantime, Kathy and Andrew have developed their own way of coping with Will’s challenges and give the following advice to parents who may face similar circumstances. “Try to relinquish control and trust in your child’s signs and messages as to what they can or cannot manage,” Kathy offers. “Also try to engage the best team of specialists you possibly can and have faith in them to help your child reach their potential.”

SPRING 2016

Sporty Kids

as “my legs didn’t grow properly”, and he’s now shooting for gold with the Australian team, the Rollers.

Shooting hoops -

They’re going for gold, having settled for silver in London four years ago and Tom is hoping his Paralympic debut will lead more young people with disability to reach for their dreams.

basketball in profile

To watch professional wheelchair basketball in action is to witness true grit and determination, strength and skill. If you are sitting at home in your wheelchair, or watching your child in one, it doesn’t take too much effort or cost to get started. Because the court size and basket height is the same as that for able bodied players, all you really need is a ball and access to a court to start practising basic skills by yourself.

“I hope to be that kind of role model for not only the young players, but everyone,” O”Neill-Thorne told his home newspaper the Northern Territory News when he was selected for Rio. “I want people to understand there is more to life than being in a wheelchair and you can do more than just basic things. If this helps one person, then my job is done.” Tom was born with the congenital condition that affects the mobility of his legs and has used a wheelchair since the age of two. He first started wheelchair basketball at the age of nine, when a local competition was established for children with and without a disability. Tom pursued his passion, wheeling his way through junior and development teams before being elevated to a starting five position with the Queensland Spinning Bullets National League Team and then becoming the youngest ever member of the Rollers squad, helping the team win its second consecutive world title at the 2014 IWBF World Championships in South Korea.

It is a great way to keep fit, increase your mobility and strength, peripheral vision and coordination and, perhaps most importantly, it is a great team sport.

Tom is just one of the 100,000-plus people across the globe who play the sport, which was one of the foundation sports on the Paralympic Program in Rome in 1960, and is now the fastest growing and most popular sports for athletes with a disability.

There are many forms of basketball that can cater for people of all abilities and ages. Programs start for kids from five years old and include walking basketball, wheelchair basketball, 3-on-3 modified games, programs for children with intellectual disabilities and Vicinity Centres Aussie Hoops.

The game was initiated in the United States in the late 1940’s when injured servicemen returned from World War II. They made simple adaptations and slight rule variations to enable it to be played in wheelchairs and it became so popular it is played in 80 countries governed by an International Wheelchair Basketball Federation.

“It is a great sport that allows all participants to take part and is easy for coaches to modify the game to suit all abilities,’’ explains Basketball Australia general manager of Community and Stakeholder Relations, Lisa Hasker.

In Australia there is the National Wheelchair Basketball League (NWBL), a national championship league with six teams from five states.

Lisa advises those wanting to start out to contact their state basketball association to find the most suitable special needs and inclusion programs. If you already dabble in a bit of dribble and need that little bit of extra motivation to take your skills to the next level, the Rio Paralympics will be a great opportunity to watch and be inspired by the world’s best. One of those champions, Tom O’Neill-Thorne, hails from the Northern Territory. Tom was born with Arthrongryposis multiplex, a condition he simply explains

Basketball Australia also promotes inclusion via six national teams for people with a disability - The Rollers (Senior Wheelchair Men), the Gliders (Senior Wheelchair Women), The Spinners (U23 Wheelchair Men), The Devils (U25 Wheelchair Women), The Boomerangs (Intellectual Disability Men), The Pearls (Intellectual Disability Women), The Goannas (Deaf Men) and The Geckos (Deaf Women). As with able-bodied basketball, they play four quarters of 10 minutes each, must abide by a 24 second shot clock, score one point per free throw, two points per field basket and three points for a shot made behind the arc of the 3-point line, which is the same distance of 6.75m.

SPRING 2016

A wheelchair basketball player takes one or two pushes while the ball is either resting on his or her lap or held in his or her hand, followed by dribbling the ball, and this sequence may be repeated as often as the player wishes. Travel violation is called when player in possession pushes more than twice without dribbling. The wheelchair is considered a part of the player when it comes to fouls. To be eligible to play wheelchair basketball, a person must have an objective and measurable permanent physical disability in their lower limbs, which prevents them from running, jumping and pivoting as an able-bodied player. Each participant is given a classifications, with the five players on the court from each team not able to exceed 14 points. So whatâ&#x20AC;&#x2122;s stopping you shooting for the stars? For more details check out the Basketball Australia website www.basketball.net.au for a list of state contacts.

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SPRING 2016

Employment Feature

Employment Transitioning from a life at school to one of gainful employment is a rite of passage we take as a given for our children. They won’t all get there in the same way: there’ll be gap years, apprenticeships, uni degrees and some might even find themselves treading the dusty halls of academia for the rest of their days. But post school, it’s pretty much assumed that our children will begin to make their own way in the world. So, what about our children with special needs? That assumption just doesn’t seem so certain. Being able to provide all our children with the opportunity to find a place where they fit in, are challenged and can provide a meaningful contribution to society feels like a fundamental role of the parent, but when your child has a disability, it can feel like a difficult role to fulfil. The idea of taking a previously engaged and enriched young adult out of school and then plonking them at home, or in a care home, with nothing more exciting

than a weekly bingo game to look forward to is the horror scenario that many parents dread but, thankfully, there are other options available. In this feature we have some tips from a workplace placement service to get you on the right track and we’ve also had a look at an inspiring vocational training centre and a mum who decided to create a work option for her son when none of the more mainstream models seemed to fit.

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SPRING 2016

Employment Feature

Ten tips for transition into the workforce 1. Engage with the school guidance or careers team early Schools are as heavily invested in a great transition outcome as you are. Ensure you contact the school and keep up to date with employment and transition events, options and planning. Work as a group to build a plan that is tailored to your child and then begin accessing supports to achieve this when it is practical. This process could start as early as year 7, to ensure study planning aligns with career or further study goals.

6. If choosing higher education or VET, engage with the disability or access teams Education providers may have an accessibility team or disability support officer(s). It’s recommended to have a meeting with one of the team and find out what supports are available for your child and build an individualised plan for support well before day one. If the training provider does not have someone designated to assist students with a disability, they are still legally required to make reasonable adjustments.

2. Access NDCO resources and networks in your local area The National Disability Coordination Officer program has developed some fantastic resources and networks with educational institutions, schools, and employment providers to collate and link the available supports and information for you in your local area. To contact your local NDCO visit: www.education.gov.au/contact-details/ For Queensland specific information visit: www.ndcoqld.net.au

7. Understand and plan for the NDIS This includes finding and keeping job supports and educational goals, if the NDIS is available to your local area. For more information and your local rollout timetable visit: www.ndis.gov.au

3. Complete the NDCO program’s Get Ready for Study and Work book This is a comprehensive and practical guide with links and resources to available supports, ideas and strategies, and top tips to get the best education or employment result for your child with a disability. www.westernsydney.edu.au/ getreadyforstudyandwork/resources/get_ready_top_ tip_workbooks 4. Know the two key services for obtaining and keeping employment for your child: - Disability Employment Services (DES) Assistance to find and keep a job, including ongoing and on the job support. For more information visit: www.employment.gov.au/disability-employmentservices-job-seekers-and-employees - JobAccess The national hub for workplace and employment information for people with disability, employers and service providers. This includes information and resources to modify and adjust workplaces. For more information visit: www.JobAccess.gov.au 5. Know your child’s rights to an education Students with a disability should have the same opportunity to enrol and participate in education as any other student. For more information visit: www.ddaedustandards.info

8. Get involved in the process and with the service providers Research demonstrates parental involvement and support is a key component of success transitioning young people from school to further education or employment. 9. Involve your child in the process It’s important that meetings and decisions are made together where possible. A vested interest in what happens next is essential for all individuals, and choice, control and decision making or input are an important part of the transition process. 10. Dream big together and don’t let people say it can’t be done In many instances, persistence beats resistance. Knowledge is power – of the services, resources, and assistance available to your child and of your child’s rights and responsibilities post school. Tips provided by Steps Group Australia www.stepsgroup.com.au

SPRING 2016

The Compass Institute Transitioning straight from school into the workspace, even with the appropriate training and supports, isn’t always possible for people with a disability. The alternatives can seem like a bit of a grim reality for our special children. We certainly want them to have the opportunity to shine, be the best that they can be and live a varied and fulfilling life; but finding the space where that is encouraged, or indeed, even expected, seems like a utopian ideal. We chatted to DJ from the Compass Institute on the Sunshine Coast in Queensland, who is passionate about providing just that for the over 100 people who attend their service. Since 2003, Compass has been operating a post-secondary service for young people with intellectual and/or physical disabilities. They embrace an innovative developmental model that allows young people with disabilities to make a smooth transition from school to an increasingly independent future. They do not babysit. Instead, they are working to change the philosophy behind this type of service from one of passive recreation to a pathway of lifelong learning, skills based training and vocational opportunities. Compass provides a service that is tailored to each individual, and they have people who are highly supported through to those taking certificate courses. While most of those accessing the program will probably not move from Compass into the workforce, they provide the opportunity for supported employment and learning opportunities within their facilities. The campus consists of a 20 acre farm with horticulture, animal husbandry, woodworking, a nursery and a commercial kitchen that produces items such as jams and

cordial. In the community, they have a shop selling items made at the Institute and a café where there is the opportunity to learn ‘front of house’ skills, as well as cash and food handling. DJ says that the people who attend the institute speak of ‘going to work’ and have a real sense of achievement and pride in the work that they are doing. They also engage in community programs and have gardening teams, for example, outside of the Institute. They believe in the right of people with disabilities to access lifelong learning opportunities and that learning is something that can be done by anyone, even though it may look different for each person. It can range from learning to hold a spoon through to learning to drive a vehicle or using a piece of machinery and everything in between. Supports range from one-to-one to three-to-one, depending on the level required and four-to-one for those on the social enterprise program. Each person is on their own program and path to success, with goals that are set and then measured. Compass believes that anything is possible where there is a vision, self-belief and a strong work ethic and so they are creating a space where real achievement, life-purpose and satisfaction for a job well done is a daily reality.

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SPRING 2016

Employment Feature How did you manage the transition from school process? Josh’s transition journey from high school to life after school has been an evolving process. It is the result of an enormous amount of planning and preparation, combined with patience, perseverance, positivity, passion and love. I always knew that for Josh to be productive, he would need to be engaged. For that to happen, he would need to be connected on a personal level to the activity he was involved in at the time. He requires routine and structure to his day in order to feel ‘safe’ and grounded, and finds comfort in repetitive tasks that are predictable and planned. In addition, preoccupations with placement, order and symmetry also comprise just about every waking moment of Josh’s day. The transition plan needed to be realistic and personcentred; it was all about Josh’s needs interests and abilities. This plan could not be about what we thought Josh wanted to do, it was about embracing all that is Josh. It was also about team work and actively involving all the important people in Josh’s world to contribute to the planning process. For Josh to have a well-rounded, balanced and meaningful plan for a smooth transition to life after school, it was so necessary to draw on the great pool of information and inspiration provided by his incredibly devoted support team.

Josh Flintoff In Josh’s words he is our, “cool, trendy, handsome, broody, groovy, funny, nice, useful teenager son forever and ever and ever!” To us, his Mum and Dad, Josh is all of the above and so much more. At 19 years of age, Josh is living the full, meaningful, productive, happy life all parents dream for their children when they eventually finish school and enter the adult world. At three years of age, Josh was diagnosed with Autism. The following year in 2001, Josh’s sister Ellie was born. Over the years, Pete and I have remained relentlessly positive, if not just a little fatigued at times, in our vision for Josh to live the life he deserves. A life full of opportunity where he is valued, appreciated and respected for the wonderfully individual and very unique young guy that he is.

School transition years: From years 10 to 13, Josh attended several supported work experience placements as part of his Independent Transition Program (ITP), an important and vital part of the school curriculum. The repetitiveness and structure of the jobs agreed with Josh to a degree, but other factors soon came into play and it was clear by the beginning of year 13 that this type of congregate setting was not suitable to Josh’s behavioural characteristics or sensory needs. In addition, he did not appear to be challenged or engaged, which also contributed to his steady decline in productivity, demeanour and increasing anxiety levels. We knew we needed to find something different.

The vision - how it all began: During Josh’s primary school years, he actively participated in recycling activities both at home and school. The old adage, ‘Reduce, Reuse, Recycle’, became a part of our everyday life as all matter of paper and cardboard waste was either regularly disposed of at the tip or delivered to the local primary school for box construction activities.

SPRING 2016

Josh’s recycling activities evolved throughout the high school years, but it was in year 11 when I decided it was time for him to have a more valued role in his local community. What better way for Josh to be appreciated, than for doing a job he already enjoyed doing as part of his regular routine at home and at school? I approached our regular local coffee shop to ask if Josh could collect their unsold and used newspapers once a week to dispose of appropriately at the tip. The answer was an extremely enthusiastic “Yes”, which was the typical response from so many other members of the community, who have since discovered Josh’s recycling talents. A few months later, the ‘light bulb’ moment occurred, due to one of Josh’s greatest passions: Wall-e the Disney Pixar Recycling Robot. Add that to Josh’s all time forever favourite love, Thomas The Really Useful Tank Engine and we have the two great inspirations for Josh’s meaningful, productive and incredibly cool life post school. Just as Wall-e cleaned up the environment one waste cube at a time, Josh would clean up the community one newspaper at a time by making recycled eco-friendly paper briquettes. The newspaper, once collected and disposed of, would now be shredded and compacted into little round briquettes that Josh named ‘Garbage Donuts’, as they literally look like donuts made out of garbage. In order for that to happen, I approached our local Men’s Shed with our vision, and the coordinator promptly agreed to make Josh a manually operated paper briquette press. Six months later, I was referred to a larger Men’s Shed who then made several additional presses as well as two paper winders for the next innovative stage of our ever evolving recycling project. There had to be more we could do with all the paper we collected and then it dawned in me – recycled newspaper PaperArt. After viewing multiple YouTube clips and researching ideas, this next creative phase started to take shape.

Later that year, I invited my friend, Del, and her son Courtney, to join our wonderful vision and work together as a team. This has been a true collaboration of minds, passions, skill sets, abilities, talents and pride. The vision, which keeps on growing, is now a wonderfully creative small business enterprise called ‘The Really Useful Recyclers’. The name was inspired by the guys’ two great loves, ‘Thomas the Really Useful Tank Engine’ and ‘Wall-e the Recycling Robot’. To Josh this is about being useful and recycling… not art. It has given Josh a wonderful sense of purpose and the smile on his face when he has done a ‘good job’ makes all the hard work worthwhile – a proud Josh makes a very very proud Mum and Dad!

Did Josh engage in any training? Josh is continually in training as we explore new creations to add to the increasing variety of PaperArt products. Every job is broken down into a series of prepared tasks, which are designed to both accommodate and extend his fine motor, creative and thinking skills. Another invaluable part of the training process has been enabling Josh to ‘mentor’ and teach his support team. So skilled in asking just the right questions, ‘Team Josh’ (as we like to say) encourage Josh to use his initiative and communication skills at every opportunity, thus instilling in him a greater sense of pride and responsibility. Josh’s social and customer service skills are also continually in training due to his regular interactions with people in and around the community, at the Men’s Shed and TAFE.

Where does Josh work? Josh’s work tasks are varied, requiring him to carry out his ever-evolving duties in different areas of the local and broader community, with members of his accompanying support team.

SPRING 2016

Employment Feature

The recycled PaperArt products are made at home from newspapers collected on his ‘community recycling pick-up day’, while the paper briquettes are made weekly at the Men’s Shed, where Josh is now a member.

and timely planning. Josh has a wonderful team of mentors who are invested in his vision. They work very closely with me to ensure he is appropriately supported through his activities, whether they be at home or in the community.

Each Thursday, Josh collects all manner of cardboard waste, newspapers and plastic bubble-wrap on his community run, to be sorted, tidied, crushed, recycled or appropriately disposed of at the local waste management centre.

There are always ups and downs. But, as with any challenge, we prefer to think of those times as learning moments and look for alternative methods and strategies to assist Josh with managing the different stages of his transition to the best of his ability.

In addition, Josh attends a few local craft markets throughout the year, providing new opportunities to interact with people in the wider community, further cementing his valued and creative recycling role. Last but not least, Josh attends TAFE a few mornings a week, where he takes part in a general education course focussing on maintaining his numeracy, literacy and community participation skills. Josh’s week is busy, with his varied work roles enabling him to be a productive, active, valued and environmentally conscious member of the community.

What does he do? Josh and Courtney create a huge range of products from eco-friendly Paper Briquettes to gorgeous recycled PaperArt coasters, platters, bowls, trivets, necklaces, bracelets, keyrings, flowerpots, beautiful framed and linen set wall-art, Christmas trees, business cards, cool packaging and other assorted miscellaneous tasks as they arise. As structure and planning are so essential to the success of Josh’s Really Useful Recycler work activities, schedules are routinely maintained in the form of a monthly calendar on the fridge and a daily job whiteboard in the kitchen, visible to the area in which he likes to do his work. Mobile phone pics are used to refer to tasks and lists when we are out and about in the community.

How did Josh manage the transition process? Josh has been supported through every step of this process as a result of very careful, respectful, thoughtful

The transition process from school to life beyond has been smoother than we could have ever anticipated due to long, steady, planning process which started years before Josh left school.

Were there any obstacles? It is usually the unexpected, unknown and any activity or decision making process that will cause obstacles to Josh’s day and the planning process. Obstacles in the early days whilst still at school presented themselves more frequently, purely due to the reality that we were continually learning and experiencing along the way – it’s all just part of the process. However, Josh’s current world is so much easier to plan and accommodate as we are in the driver’s seat. If Josh requires a different strategy to complete a task, we work through it. If there is too much sensory input, we adjust the environment accordingly. If plans need to change unexpectedly for any reason, we will modify the schedule with an alternative preferred activity. If for any reason Josh’s stress and anxiety levels are triggered, his support team and I know well enough how to refocus his attention, support his needs and hopefully calm him down before the situation escalates.

How has is changed your lives? Benefitted Josh? Josh’s smooth transition from school to life beyond, has changed our lives so positively and profoundly as it has allowed us to see firsthand how meaningful, productive and balanced his life can be.

SPRING 2016

With a realistic, relevant and truly person-centred plan, the vision of a fulfilling and valued future can be a reality. As Josh’s parents, the drive, passion, commitment, energy, dedication, devotion, patience, perseverance and love that contributes to the planning process is ongoing and at times stressful, but Josh’s pride, amazing work ethic, focus and sense of purpose make it all so very worthwhile. Josh is working at a job he is actively engaged in and connected to on a personal level. For as long as he is useful, recycling and challenged in those roles he is happy. His affinities, interests, passions or obsessions (as some may choose to say), are a large part of who he is as a person and the way he comprehends, interacts and perceives the world around him. To truly appreciate the essence and soul of Josh, we must embrace his beautiful mind. As long as we do that, all our lives will continue to benefit in the most positive and fulfilling way.

Advice for other families going through the process? Start planning early. Be realistic about your child’s abilities, skill set, attributes, sensory needs and behaviours, as well as their challenges. Embrace your child’s interests – a productive, fulfilling future is about thinking what they think they might like to do and not what you think they might like to do. We are all interested in something for a reason, e.g. recycling like Wall-e because he is cleaning up earth and making it look tidy or Charlie and Lola because Charlie is a funny and a good brother to his little sister, Lola. Be patient and persevere. Times of transition can be overwhelming, daunting, emotionally confronting, draining and scary. Try to keep it simple. All good plans have a vision, even if that vision is purely and simply to live a full, balanced, meaningful life. From that vision, the goals will come, then the strategies. The plan will start to develop with your child as they grow and evolve. Try as many new opportunities as you can while your child is at school in a familiar environment with familiar supports, surrounded by staff who they are comfortable with and understand their needs.

Collaborate! Build a team – all those important people in your child’s life may have something very valuable to contribute. Our children are different with other people and may surprise us with new and different activities we have not seen them engage in before. Allow your child’s support team to have a vested role in the vision so they feel appreciated and valued in their role and responsibilities of caring for, supporting and mentoring your son or daughter through the planning process and beyond. Share experiences, information, knowledge and insights with other families – our children are their own individuals, our family dynamic may be different, but our lives and experiences as parents and carers will at times parallel. Learn from those who walk or have walked a similar path before you. Our journey, with all its achievements, challenges, laughter and tears, is easier shared than lived alone. Take time to care for yourself. If our children are to be the best people they can be, we need to be the best parents, people and carers we can possibly be to enable the process. And just remember: ‘from a seed, a vision grows’.

SPRING 2016

Special Needs

Teacher

All teachers are remarkable people but the teachers who put their hearts into guiding, educating (and loving) our special needs kids are extra-specially so. In this issue we speak to Berris Smith from Nambour Special School in Queensland. Name: Berris Smith Ages I teach: Currently 5-7 year olds. How long I’ve been teaching: I qualified as a mainstream teacher in the UK in 1996 (how did I get so old!). After moving to Australia in 2008 and doing relief work in several schools, I began volunteering at Nambour Special School in 2009 and have never looked back. Why I became a special needs teacher: A large part of my ‘conversion’ to Special Ed is the amazing people I work with. When I began volunteering, I admired the dedication and passion of the staff here at Nambour and the determination to get the best out of

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every student. I love being a part of that now and trying to figure out each student’s quirks and the best way to tap into their potential. My teaching philosophy: If it doesn’t make a mess it probably isn’t fun! For the students I’m currently working with it is all about trying to engage and expand their interests while developing their ability to communicate their wants, needs and preferences. If my students can make their own choices and have their ‘voice’ heard I’m happy. Favourite activity: Anything that makes a connection with the individual student. For some it is the noisy, active, messy chaos of sensory play but for others it’s the quiet 1:1 intensive interactions or shared reading sessions. Having a mix of all of this in the working day is the best part of the job. What do I wish parents would tell me at the start of the year: Our Gr8 Start transition programme covers a lot of the key information we need about each student’s preferences

and abilities, and helps us find ways to help the children feel safe, secure and happy at school. Often with special needs students we focus on the things the student struggles with. I’d like the parents to tell me what makes their child special beyond their disability, what does their child excel at, what makes them shine, even if it’s not ‘school’ related. Favourite part of the job: Those light bulb moments when a student does something independently for the first time after working towards it for a while. Those times when the student realises they ‘did it’ and are proud of themselves. The reflection at the end of each week, term, year of how far we’ve come. Toys, books, products to recommend: I’m a big believer in imagination so toys and objects that can be utilised in a variety of ways are important. I love watching children with a box or a piece of fabric. Favourite apps include Proloquo2go for communication, and Bitsboard and Explain Everything are great apps for teachers trying to cover the curriculum.

• World class products for children with extra special needs • Accessible and affordable medical orthopaedic footwear • Helping with pronation, pigeon toes, collapsed ankles and decreased arch support • Special range for children with CP • Australia-wide

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SPRING 2016

My child’s a runner -

The list of possible reasons is endless and these are but a few. The key is to know that running away in public is not random. It is happening for a reason. Without investigating this reason, we are simply judging the behaviour to be wrong and not understanding from the child’s perspective. Some questions you could ask yourself include:

Going to public places can be a nightmare for many parents due to their child being a ‘runner’- running from shops, car parks, beaches, the park, or anywhere where there is an open space.

• What could actually be happening for them?

No behaviour is ever random. It is essential that we don’t judge the behaviour to be wrong and just try and stop it. The first goal is to develop understanding because we know that every behaviour is happening for a reason.

In the moment, what can I do?

what do I do?

Sometimes it is hard to identify exactly what the reason is, especially when there can be a number of them for one specific behavior. At the core of it, it is important to understand that the child is experiencing anxiety around something that is happening in their life and they don’t feel like they have all the required skills to manage that aspect of life effectively. Your child may be running off because: • They have hypersensitivities to any one of their senses and their environment has resulted in sensory overload. Children sometimes see running (and escaping) as their only option to relieve the sensory overload. • They become anxious around crowds and do not feel like they have the required skills to manage when there are lots of people. • They had a picture in their head that something would happen in a certain way and that hasn’t happened. • They simply did not want to go where you were taking them: their agenda was different to yours, they are upset that you are not considering what they wanted to do and they don’t know when/if what they wanted to do will happen. • They like to control the emotional reactions of other people and they have learnt that by running away the adults around change their behaviour.

BEHAVIOUR SPECIALIST Multi-Disciplinary Centre Psychology ~ Behaviour Specialist Services ~ Speech Pathology ~ Occupational Therapy ~ Counselling

• What might they be experiencing in life that is causing them to run? • What are they trying to escape from?

When your child is already anxious, chasing will typically make them run faster, become less aware of where they are actually running and thus increase the safety issues. When your child is too far ahead and uncatchable, running after them is not be advisable, instead try to keep an eye on where they are and walk slowly towards them! If they are in close proximity and catchable, then hold them firmly in your arms, sending them a message that you are there to support them. Plan ahead. If your child runs off often, have a safe place for your child to run to. For example, a chair on the outside of the shopping centre is a place they can go to that will: 1. Relieve them partially of their sensory overload 2. Provide a safe place to run to if the shopping centre becomes overwhelming 3. Allow the child to know there is somewhere they can go to where they will be found and won’t be in trouble 4. Allow the carer to feel less anxious as they know where their child is going when they do run. Put strategies in place for yourself to remain calm (gentle breathing), knowing that as your own anxiety levels increase you are actually adding to the situation by either providing the reaction your child was after, or adding to your child’s anxiety and thus increasing the intensity of the behaviour. Tanya Curtis Fabic Behaviour Specialist and Counsellor

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SPRING 2016

ONLINE & SOCIAL STUFF e v lo

Facebook Passion 2 Purpose: A Transition Tale About Being Really Useful Deb Flintoff writes with humour and passion about her son, Josh, and his transition into the workforce in this weekly Facebook blog. Like the page – you’ll be glad you did.

Online Gaming www.kids.triplezero.gov.au Most kids love an online game, which is why this is a great way to teach the basics of 000 safety in a fun and relaxed way.

Instagram Helping Hoops Helping Hoops is an independent charity based in Melbourne running free weekly basketball programs for over 1,000 disadvantaged and children with a disability every year. Their 350-plus sessions per year benefit kids of all abilities aged 7 to 21.

WWW Website www.startingwithjulius.org.au A starting point for your child’s journey into the media world, this website also contains a blog section, with posts that are informative and entertaining. See if you can recognise some of our Source Kids favourites.

Instagram Pride Socks These long socks with brightly coloured stripes are the signature style of Pride Socks. Wearing these stylish socks is a reminder to never give up and continue chasing the life you dream of! Our cover girl, Emily, is rocking Pride Socks this issue. #pridesocks

SPRING 2016

Directory AIDS AND EQUIPMENT Brooks Fire Evacuation Warning Systems

4 Pike Street Rydalmere NSW

1300 783 474

www.brooks.com.au

EDSCO Education Supply Company Pty Ltd

50 Yiada Street Kedron QLD

07 3350 2677

www.edsco.com.au

HART Sport

605 Zillmere Road Aspley QLD

1300 764 719

www.hartsport.com.au

Korthotics

5/10 George Street Leichhardt NSW

02 9569 3672

www.korthotics.com.au

Link AT

Level 3, 169 Fullarton Road Dulwich SA

08 8330 4102

www.linkassisttive.com

Medifab

26 Pardoe Street East Devonport TAS

1300 543 343

www.medifab.com.au

Ninja Babies

9 Merimist Way Kiels Mountain QLD

0422 068 159

www.ninjababies.com.au

R82

PO Box 284 Botany NSW

02 8213 6666

www.r82.com.au

Special Needs Solutions

Unit 4/15 Industrial Avenue Molendinar QLD

07 5597 4321

www.specialneedssolutions.com.au

Unique Care

9-11 Point Henry Road Moolap VIC

03 5248 8369

www.uniquecare.com.au

Little Big Feet

6/2069 Moggill Road Kenmore QLD

07 3378 5935

www.littlebigfeet.com.au

Wonsie Bodysuits

Sydney NSW

0409 309 129

www.wonsie.com.au

JettProof

PO Box 5281 Kahibah NSW

1300 667 687

www.jettproof.com

Cleverstuff Educational Toys

Unit 26 9-12 Lambridge Place Penrith NSW

02 4708 2451

www.cleverstuff.com.au

EDSCO Education Supply Company Pty Ltd

50 Yiada Street Kedron QLD

07 3350 2677

www.edsco.com.au

Flying Fox

342 Hawthorn Road Caulfield South VIC

0404 495 111

www.flyingfox.org.au

Paediatric Therapy and Workshops

Geelong VIC

0412 751 741

www.paediatricworkshops.com.au

ShowMe Images

41/195 Wellington Road Clayton VIC

03 9585 2299

www.showmeimages.com

PO Box 96 Launceston TAS 7250

03 6332 9200

www.bellamysorganic.com.au

ATSA Independent Expo

Sydney Olympic Park & Royal International Convention Centre Sydney

1300 789 845

www.atsaindependentlivingexpo.com.au

ESPY Connect

PO Box 3287 Valentine NSW

0416 223 957

www.espyconnect.com.au

Life Without Barriers

352 King Street Newcastle NSW

1800 WE LIVE

www.lwb.org.au

Paediatric Therapy and Workshops

Geelong VIC

0412 751 741

www.paediatricworkshops.com.au

Flying Fox

342 Hawthorn Road Caulfield South VIC

0404 495 111

www.flyingfox.org.au

HART Sport

605 Zillmere Road Aspley QLD

1300 764 719

www.hartsport.com.au

Sport Inclusion Australia

4 Lowry Place Benalla VIC

03 5762 7494

www.sportinclusionaustralia.org.au

ACD (Association for Children with a Disability)

Suite 3, 98 Morang Road Hawthorn VIC

03 9818 2000

www.acd.org.au

Angelman Syndrome Association

PO Box 554 Sutherland NSW

02 8521 7463

www.angelmansyndrome.org

ARC Disability Services Inc

92 Little Street Manunda QLD

07 4046 3600

www.arcinc.org.au

Association of Genetic Support Australasia

66 Albion Street Surry Hills NSW

02 9211 1462

www.agsa-geneticsupport.org.au

Ausdocc Inc.

10 High Street Seaholme VIC

0428 579 121

www.ausdocc.org.au

Australian Kabuki Syndrome Association Inc

13 Lockwood Road Erindale SA

Australian Leukodystrophy Support Group

PO Box 2550 Mount Waverley VIC

1800 141 400

www.alds.org.au

Australian Mitochondrial Disease Foundation

Suite 4, Level 69, 13 Young Street Sydney NSW

1300 977 180

www.amdf.org.au

Autism Awareness Australia

PO Box 288 Seaforth NSW

02 9904 8700

www.autismawareness.com.au

CLOTHING AND ACCESSORIES

EDUCATION

HEALTH AND NUTRITION Bellamyâ&#x20AC;&#x2122;s Organic

PROFESSIONAL SERVICES

SPORT AND RECREATION

SUPPORT SERVICES

Autism Spectrum Australia (ASPECT)

www.kabukisyndromeassoc.com.au

1800 277 328

www.autismspectrum.org.au

Autism Tasmania

PO Box 514 Moonah TAS

03 6278 9985

www.autismtas.org.au

Beyond Blue

PO Box 6100 Hawthorn West VIC

1300 224 636

www.beyondblue.org.au

CARA

98 Woodville Road Woodville SA

08 8347 4588

www.cara.org.au

Cerebral Palsy Australia

Level 39, 259 George Street Sydney NSW

02 8259 7725

www.cpaustralia.com.au

Cerebral Palsy League

55 Oxlade Drive New Farm QLD

1800 272 753

www.cpl.org.au

SPRING 2016

Cerebral Palsy Support Network

525 High Street Preston VIC

03 9478 1001

www.cpsn.org.au

CHARGE Syndrome

PO Box 91 Glenfield NSW

02 9605 8475

www.chargesyndrome.org.au

Conexu Foundation

PO Box 528 Stones Corner QLD

1300 077 321

www.conexu.com.au

Cornelia De Lange Syndrome Association (Australasia) Inc

PO Box 20 Putney NSW

02 9809 0287

www.cdlsaus.org

Cri Du Chat Support Group of Australia

104 Yarralumla Drive Langwarrin

03 9775 9962

www.criduchat.asn.au

Deaf Australia

PO Box 1083 Stafford QLD

07 3357 8277

www.deafau.org.au

Deaf Children Australia

PO Box 6466 St Kilda Road Central VIC

1800 645 916

www.deafchildrenaustralia.org.au

Down Syndrome Australia

219 Napier Street Fitzroy VIC

1300 658 873

www.downsyndrome.org.au

Epilepsy Australia

20 Charrington Court Baulkham Hills NSW

1300 852 853

www.epilepsyaustralia.net

ESPY Connect

PO Box 3287 Valentine NSW

0416 223 957

www.espyconnect.com.au

Extended Families Australia

1/95 Bell Street Coburg VIC

03 9355 8848

www.extendedfamilies.org.au

Foundation for Angelman Syndrome Therapeutics Australia

PO Box 248 Salisbury QLD

1300 078 108

www.cureangelman.org.au

Hummingbirds

179 Dart Street Redland Bay QLD

0412 363 856

www.hummingbirdseies.com

Langford Support Services

PO Box 717 Moonah TAS

03 6228 9099

www.langford.org.au

Learning Difficulties Coalition

PO Box 140 Westmead NSW

02 9806 9960

www.ldc.org.au

Lifeline

PO Box 173 Deakin ACT

13 11 14

www.lifeline.org.au

Life Without Barriers

352 King Street Newcastle NSW

1800 WE LIVE

www.lwb.org.au

Lions Club Australia

31–33 Denison Street Newcastle West NSW

02 4940 8033

www.lionsclub.com.au

Mamre Association Inc

40 Finsbury Street Newmarket QLD

07 3622 1222

www.mamre.org.au

Prader-Willi Syndrome Association

VIC

0451 797 284

www.pws.asn.au

Rare Voices Australia Ltd

Suite 2, 3 The Postern Castlecrag NSW

02 9967 5884

www.rarevoices.org.au

Rett Syndrome

PO Box 855 West Perth WA

08 9489 7790

Royal Far West

19-21 South Steyne Manly NSW

02 8966 8500

www.royalfarwest.org.au

SAKKS – Supporting Aussie Kids with Kabuki Syndrome

PO Box 318 Rundle Mall SA

0422 608 858

www.sakks.org

Spina Bifida Foundation Victoria

Level 4, Ross House, 247 Flinders Lane VIC

03 9663 0075

www.sbfv.org.au

Steve Waugh Foundation

Level 11, 17 York Street Sydney NSW

1300 669 935

www.stevewaughfoundation.com.au

St Giles

65 Amy Road Launceston TAS

03 6345 7333

www.stgiles.org.au

Syndromes Without A Name (SWAN) Australia

PO Box 390 Fairfield

0404 280 441

www.swanaus.com.au

The Fragile X Association of Australia

Suite 6, Level 3, 39 East Esplanade Manly NSW

1300 394 636

www.fragilex.org.au

The Shepherd Centre

146 Burren Street Newtown NSW

02 9370 4400

www.sherherdcentre.org.au

1300 847 466

www.visionaustralia.org

08 7329 5409

www.wsasa.org.au

Vision Australia Williams Syndrome Association of SA

83A Ridgway Drive Flagstaff Hill SA

Xavier Children’s Support Network

284 Pine Mountain Road MtGravatt East QLD

Young People in Nursing Homes National Alliance

207 City Road Southbank VIC

0437 178 078

www.ypinh.org.au

Ability First Australia

Level 39, 259 George Street Sydney NSW

1800 771 663

www.abilityfirstaustralia.org.au

AEIOU Foundation for Children with Autism

Central Office: N70 Recreation Road Nathan QLD

07 3320 7500

www.aeiou.org.au

Everyday Independence

The Nerve Centre, 54 Railway Rd, Blackburn

1300 179 131

www.everydayind.com.au

M.O.T.A. Melbourne Occupational Therapy Associates

603-605 Nicholson Street Carlton North VIC

03 9387 1734

www.melbourneot.com

Movement Solutions

1/26 Eva Street Coorparoo QLD

07 3324 2490

www.movementsolutions.com.au

Nacre Consulting

8 Steele Street South Caulfield VIC

0448 316 319

www.nacre.com.au

OCC Therapy

PO Box 118 Kenmore QLD

07 3378 9543

www.occtherapy.com.au

St Giles

65 Amy Road Launceston TAS

03 6345 7333

www.stgiles.org.au

Therapies for Kids

37 Nelson Street Annandale NSW

02 9519 0966

www.therapiesforkids.com.au

TLC Psychology P/L

Tasmania and Victoria

0410 788 844

www.tlcpsychology.com.au

www.xcsn.org

THERAPY PROVIDERS

TOYS AND RESOURCES ARC Toy and Library Resource Centre

92 Little Street Manunda QLD

Children’s Disability Products

07 4046 3600

www.arcinc.org.au

0417 510 606

www.childrensdisabilityproducts.com.au

Cleverstuff Educational Toys

Unit 26 9-12 Lambridge Place Penrith NSW

02 4708 2451

www.cleverstuff.com.au

My Diffability

PO Box 3121 Caroline Springs VIC

03 8456 6613

www.mydiffability.com.au

SenseAbilities

12 Winyard Drive Mooroolbark VIC

The Toy Bug Windmill Educational Toys and Equipment

265 Charles Street Launceston TAS

03 9726 8047

www.senseabilities.com.au

0400 375 351

ww.thetoybug.com.au

1800 333 634

www.windmill.net.au

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Enter the above competitions online at www.sourcekids.com.au/win

SPRING 2016

What’s on Calendar September

5 Oct

World Cerebral Palsy Day www.worldcpday.org

10 Oct

World Mental Health Day

www.mentalhealthcommission.gov.au

7-18 Sept

15 Oct

www.paralympic.org

www.15october.com.au

9 Sept

15 Oct

Rio 2016 Paralympic Games

Fetal Alcohol Spectrum Disorder Awareness Day NOFASD Australia www.nofasd.org.au

Pregnancy and Infant Loss Awareness Day

KYD-X Disability Expo Priceline Stadium SA www.kyd-x.com.au

14 Sept

Support deaf kids Where your money goes

Disability Awareness and Post School Options Expo Sleeman Sports Centre Chandler QLD www.specialcarecentral.com.au

Support deaf kids

$50

DETAILS OF OUR LOUD SHIRT DAY TIME:

DATE: DETAILS:

helps cover the cost of a video therapy lesson for a deaf child living in a small town

$250

supports a child to receive speech and language assessments to ensure key milestones are being met

will support regular social skills activity sessions for children, siblings and parents

$1,000 Can’t take part? Donate to our Loud Shirt Day by visiting

www.loudshirtday.com.au or call 1300 721 326

16-17 Sept

$500

can buy resources for parents and therapists to assist their child’s development

$100

provides a suite of therapy sessions to help a child learn to listen and speak

$10,000

contributes to the running of an annual program to underpin therapeutic services

FUNDS RAISED WILL GIVE THE GIFT OF SOUND AND SPEECH TO DEAF CHILDREN The following charities are recipients of Loud Shirt Day: The following charities are recipients of Loud Shirt Day:

Nepean Disability Expo

21 Oct

Exhibition Marquee, Penrith panthers NSW www.disabilityexpo.org.au

www.loudshirtday.com.au

Loud Shirt Day (to support Deaf children)

17 Sept

Usher Syndrome Awareness Day www.usherkidsaustralia.com

21 Sept

Walk With Me – various events across Australia www.walkwithme.org.au

27 Oct

Sky’s the Limit Mini Olympics

brought to you by Essential Employment and training, Beaton Park Wollongong NSW www.eetgroup.com.au

30 Oct

Great Strides - Cystic Fibrosis

28 Sept

Perform-ability Annual Concert Extravaganza NSW www.perform-ability.com

www.greatstrides.com.au

November

22-23 Sept

Get Real Parents and Carers Day, Brisbane QLD www.getrealinternational.com

October Dogtober – Assistance Dogs Australia www.dogtober.org.au

4-16

Down Syndrome Awareness Week and Buddy Walk www.downsyndrome.org.au

15-21 Nov

Perinatal Depression and Anxiety Awareness week – PANDA www.panda.org.au

17 Nov

Assistance Dogs Australia Awareness Week Event - next to Martin Place Sydney NSW www.assistancedogs.org.au