Source Kids Spring 2019 by Source Kids

ISSUE 21

SPRING 2019

THE

FRIENDSHIP ISSUE

WIN A SPR

IN TRAMPOGLFREE INE

The importance of friends for all of us

PLAYGROUND SKILLS FOR KIDS

Hospital services to help during your stay

UNDERSTANDING BULLYING Online relationships & safety tips

Motherhood and mental health

SOCIAL GROUPS TO SUPPORT YOU BIKES & TRIKES REVIEWED

GOLF

FACIAL DIFFERENCE

NDIS GLOSSARY

INCLUSIVE ACTIVITIES FOR THE WHOLE FAMILY

Discover our one-on-one specialist disability services.

When you place the future of your loved one in our hands, you can be confident in the specialist disability services we offer. From Behaviour Support Specialists to Occupational Therapists to Speech Pathologists, we have 100s of dedicated staff to deliver whatâ&#x20AC;&#x2122;s best for your child. As a registered NDIS provider, we have over 35 locations across NSW, SA, ACT and the Gold Coast. Call us today, for specialist assistance.

When that moment comes, weâ&#x20AC;&#x2122;re here.

1800 236 762

benevolent.org.au

ISSUE 21

SPRING 2019

inside FEATURES & ARTICLES

PECIAL FEATURE S - FOCUS ON FRIENDSHIPS 9

ALLPLAY

AllPlay LEARN is an innovative Victorian program that aims to support inclusivity of children and young people with developmental challenges and disabilities. It’s delivered in an education setting through the development of online evidencebased resources and training targeted at teachers and educators as well as online resources for parents and children. To learn more about this program, please go to: www.allplaylearn.org.au

We got this

12 Support and social groups for your special needs journey 14

Understanding bullying

With a little help from our friends

Online relationships and social media safety

Being a friend in the playground

Apps to help your child with social skills

The sibling bond: first and forever friends

32 Play as a language. Understanding play therapy

BIBULOUS 35

Inclusive activity ideas for the whole family

NDIS terms explained

38 Product spread: social skills products and services 46

How to achieve better health and wellbeing

Golf

Bikes and trikes product review

Let’s go ride a bike

Exercises to help get your child riding

Rare disease: Facial difference

Hospital services for you and your child

Only those in the know will realise what you are wearing. Bibulous bibs look so much like ordinary clothing that a superhero-speed costume change by mum will leave everyone speechless! How did she do it? The secret is that there is only one fastening, a secure popper at the back of the neck. No wrestling arms into sleeves, no slam-dunking over the head moves, just popper on and away you go. Bibulous Bibs are designed for children, teenagers and adults who feel self-conscious about wearing bibs. With no side seams and a shortened back, they are easy to put on and take off. www.bibulous.com.au

SPECIAL BOOK

REGULARS 4

We Love

Welcome

Family profile – meet the Lindsay family

What’s on calendar

Competition corner

COVER IMAGE Maleeta Morgan from Studio M Photography $ studiomphotography101 ! Studio M Photography

It’s here! The book we all wish we’d had at the start of our special needs parenting journey! SPECIAL is an uplifting, candid companion that deep dives into those questions, doubts and fears we go through in the early stages of navigating our child’s disability: Why has this happened to me? Will I ever stop comparing my child to typical children? And the big one, what will my future look like? Journalist and special needs parent Melanie Dimmitt interviewed more than fifty families in the making of this beautiful book that shares true stories, expert advice and actionable coping strategies for anyone whose life has taken an unexpected turn. We have 2 copies to give away in our Competition Corner this issue, so be sure to enter! Instagram @the_special_book

ISSUE 21

SPRING 2019

www.sourcekids.com.au

we love

SOURCE KIDS

WE LOVE

DREAMA 24HOUR POSITIONING SYSTEM

Dreama features a pressure-reducing mattress and posture support system combined, suitable for children and adults. It’s particularly useful for those who, without the proper support, are likely to alter their position involuntarily and find themselves unable to readjust their posture so they are comfortable again. www.medifab.com.au

FERGUS AND DELILAH

Fergus & Delilah’s vision is to create – “an inclusive society; where diversity is valued and all children have the opportunity to realise their rights and reach their full potential. Fergus & Delilah is a story about a young girl eager to make friends on her first day at a new park. But she soon discovers that making friends isn’t always as easy as a simple ‘Hello’. The now not-for-profit and charity is passionate about genuine and meaningful inclusion in our communities. If you are interested in buying a book and sharing with others please check out their website: https://fergus-delilah.com/ Or take a look at their journey at www.instagram.com/fergusdelilah

‘Too Peas In A Podcast’

THE MELTDOWN KIDS

There are seven books in all in the Meltdown Kids series - one for every day of the week. Each story is about a child who goes into meltdown. The reason for the meltdown is explained (Sensory Processing Disorder related) and appropriate strategies for dealing with these are detailed in each book. Created in the UK by Linda Plowden, an experienced Paediatric OT, and her brother-in-law, Hugo Plowden. www.meltdownkids.co.uk

Meet Mandy and Kate – two women on the road less travelled. Mandy and Kate have created a brilliant podcast following their own experiences of navigating the path of special needs parenting – both with their own set of twins with disability. Tune in each week, as every episode explores a different theme. We promise they will have you laughing and crying by the end of each episode! Socials: toopeasinapodcast.podbean.com Facebook: @Too-Peas-In-APodcast-324137718501198/

ISSUE 21

SPRING 2019

welcome

TO SOURCE KIDS

ISSUE 21

SPRING 2019

SOURCE KIDS LIMITED

Here at Source Kids, our team is made up of parents connected to the special needs community; we’re workmates, but our shared experiences have made us so much more. We have each other’s backs; we’ve cried together, laughed, celebrated, ranted and shared more than one or two glasses of wine with each other. We each know that someone will be there for us if we need them, even if we’re separated by time or distance.

PO Box 690, Noosaville QLD 4566 ABN: 36 614 552 171

We’re very grateful and know that we’re fortunate to have this instant ‘mini-network’ as one of the comments we see a lot about special needs parenting is how lonely and isolating it can be; especially in those early days of diagnosis when the disconnect with your ‘old life’ can be quite sudden and disorientating. Sometimes, some of the friendships we have in pre-diagnosis, prekids days don’t survive the abrupt changes in our lives and we’re left starting over, looking at ways to build new networks with people who just ‘get it’.

ADVERTISING

The positive news, however, is that there are heaps of others out there who do get it. The special needs community is incredibly tight knit and on the most part incredibly supportive of each other. Some of the bonds we make with like-minded parents who are sharing similar struggles and celebrating those tiny wins only those of us who know understand, will be some of the strongest of our lives. When it comes to our kids, relationships are a huge issue for them too. How many sleepless nights have you had worrying about whether things are going ok in the playground at school? Are they able to make friends? Are they lonely? Are they being bullied? Or importantly, do they understand how to be a good friend themselves? A lot of things that parents of ‘typical’ kids will worry about too but it’s all amplified when your child is ‘different’. So, enter our Spring Issue where we focus on all things friendships. Parents talk about the relationships that have had an impact on their lives, Author Mel Dimmitt tells us about the people she’s met on the journey to her new book, Special, plus there are loads of tips and advice to help our kids connect. Elsewhere we have a huge review of bikes and trikes (get out there and enjoy the warmer weather!), look at some hospital services that help relieve the pressure for parents and kids, get back to basics with a NDIS glossary and hear about all abilities golf. Before we sign off, we can’t forget to tell you about the Source Kids Expo we held in Brisbane back in July. It was our second event held in Brisbane and the second Expo this year after Melbourne in March (watch this space for news of three Expos next year, including Sydney!). The Brisbane event was a huge success with 1000s of attendees getting the chance to meet with service providers, try out equipment, listen to speakers, have some fun and most importantly connect with others – because at the end of the day isn’t that what it’s all about?

WRITERS AND CONTRIBUTORS Nicole Davis, Rachel Williams, Emma Price, Naomi Sirianni, Kelly Wilton, Melanie Dimmitt, Julie Jones, Vanessa Lindsay, Tanya Curtis, Dr Susan Lowe, Ariella Lew, Thomasina Williams, Trish Hill, Tricia Munn, Prof Helen Bourke-Taylor, Sarah Wilding

ADVERTISING BUSINESS DEVELOPMENT MANAGER Naomi Sirianni – 0447 755 043 naomi@sourcekids.com.au

Carmen Smith - 0438 847 696 carmen@sourcekids.com.au Rachel Munro-Murphy – 0447 436 837 rachel@sourcekids.com.au

DIGITAL CONTENT EDITOR Nicole Davis nicole@sourcekids.com.au

GRAPHIC DESIGN Richard Deverell, Dev Design & Creative www.devdesign.com.au

PUBLISHER/CEO Emma Price Editorial and advertising in Source Kids is based on material, written and verbal, provided by contributors and advertisers. No responsibility is taken for errors or omissions, and opinions expressed do not necessarily reflect those of the publisher. All material in Source Kids is subject to copyright provisions. No part of this publication may be reproduced without written permission by the publisher.

Source Kids is distributed through therapy centres, hospitals, paediatricians, special needs schools and early intervention centres. For distribution enquires, contact info@sourcekids.com.au

The Source Kids Team

ISSUE 21

Send all letters and submissions to: editor@sourcekids.com.au

DISTRIBUTION

much love 6

www.sourcekids.com.au

SPRING 2019

www.sourcekids.com.au

we love

SOURCE KIDS

WE LOVE

LUSIO REHAB Lusio Rehab is a dynamic way to look at rehabilitation through fun, creativity and technology. LusioMATE has been created to give the user a gaming platform that has a wearable controller that motivates clients (players) to do rehabilitative movements prescribed by clinicians. The motivation to play enables them to reach their rehabilitation goals. LusioMATE is designed to be played at home, on the go or in a clinic on almost any device. https://lusiorehab.com/

Haven Creations Haven Creations is a beautifully designed range of jeans, which was initially developed from a desire to encourage independence with great comfort and style. A strong elastic waist enables easy on, easy off with the confidence of sitting firmly on the hip. The straight leg compliments any type of footwear as well as offering freedom of movement to suit any lifestyle. We love all products that promote independence for our kids so check these out here: havencreations.com.au/

MOGO WHEELCHAIRS At Mogo Wheelchairs, ALL chairs are 100% custom made to order and fitted with only the best parts and components. They offer state of the art designs for adult and kids; once you have chosen your favourite colour, custom-designed spoke guards really are the icing on the cake. Whether itâ&#x20AC;&#x2122;s showing off your favourite sports team or standing out with a cool cartoon character by your side, there is no better way to really let your personality shine. www.mogowheelchairs.com.au

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FEATURE

FRIENDSHIP

FOCUS ON

friendships “Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one.” – C.S. Lewis

The people we meet on the special needs journey can produce some of most important bonds we’ll have in our lives. Over the next few pages we look at the impact friends have made on just a few readers lives and share some useful tips & resources to help our children (and parents & carers too!) reach out and connect with others.

BY MELANIE DIMMITT

We Got

IT’S A MONDAY EVENING. A FRIEND AND I ARE ENROUTE TO A SELF-CARE SEMINAR FOR MUMS. SHE DRIVES WHILE I GAB AWAY ABOUT THE IMMINENT WINE AND CHEESE, REVELLING IN THE FREEDOM OF A RARE WEEKNIGHT OUT – LOOK AT US, NURTURING OUR BARELYTHERE SELF-CARE REGIMENS! THEN MY PHONE STARTS RINGING. MY PARTNER’S NAME FLASHES ON THE SCREEN. MY STOMACH LURCHES.

FRIENDSHIP

THE IMPORTANCE OF FRIENDSHIPS

this !

This isn’t good. I’d left the house with the niggling feeling that my son was out of sorts. While technically non-mobile and non-verbal, our three-year-old has ways of letting us know when something’s not right. That evening his limbs had been stiff – not unusual for a kid with quadriplegic cerebral palsy – but the real red flag was that we couldn’t get him to smile. His favourite Frozen song didn’t muster so much as a smirk. I’d felt uneasy as I transferred my purse, phone and keys into a handbag that needn’t facilitate an aisle’s worth of Baby Bunting kit (did I mention we also have an 18-monthold?) but my partner, the legend he is, said: ‘Go, have fun.’ Half an hour later, in the car with my friend, I hold my breath and answer his call. ‘An ambulance is on its way,’ he says, cool and collected considering the circumstances. ‘I’m coming,’ I reply, and before I’ve so much as looked at my friend she has pulled off an impossible U-turn and is hooning back to my house. I start to stammer out how sorry I am for ruining our night and she stops me abruptly. ‘I am the absolute last person you need to be apologising to,’ she says. ‘Trust me, I get it.’ As another mother of a child with disability, she really does. If you’d described this scene to me three years ago I would have been horrified. By the medical emergency, of course, but also because the self-care seminar I was on my way to was specifically designed for parents raising children with disabilities. In the early weeks and months that followed my son’s diagnosis I would sooner have snorted wasabi than congregate with parents in a similar spot. I couldn’t bear to admit that I had anything in common with that cohort. It was not a club I wanted to join. So, unlike more diligent mothers I’ve since met who were quick to infiltrate the Facebook groups, foundations and support networks, I didn’t seek out kindred spirits on the special needs scene. My first encounters happened sporadically – and very slowly. Some months after the diagnosis a colleague at the magazine I was working for slipped me the phone number of her aunt who also has a child with cerebral palsy, a few years ahead of mine. After much hesitation, I called her, a total stranger, and was immediately ensconced in the warmth of our rapport. This mother is a practical sort and told me about some therapies my son could start. ‘Get busy,’ she said. ‘Stay proactive. And call me any time.’ I hung up the phone feeling better already.

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DURING MY EARLIER EFFORTS TO PULL MYSELF OUT OF MY MISERY, WHILE KEEPING OTHER PARENTS AT ARM’S LENGTH, I HAD DECIDED TO WRITE A BOOK.

On her advice I found Arlo an excellent therapy centre and, in its waiting room on a well-worn couch, I would meet Rebecca and Joanna, two mothers whose children have cerebral palsy. Tired-eyed exchanges turned to small talk, small talk turned to takeaway coffees and a few months later we were out to lunch, sipping something stronger while chatting about thoughts and feelings I had filed away as strictly off-limits. I told Bec and Jo how I feared the future. How I never felt like I was doing enough for my son. How it killed me to compare him to other, textbookperfect kids. How I was holding on to hope, despite the odds. They listened, empathised and shared their own struggles with me. I departed that lunch feeling lighter. Like, I’ve got this. Like no matter what happens, everything will be okay. I’d discovered that talking with other parents travelling this not-so-predictable path is, hands down, the best antidote to the obsessions that come with this gig. During my earlier efforts to pull myself out of my misery, while keeping other parents at arm’s length, I had decided to write a book. Under the guise of ‘research’, I contacted people all over the world, raising kids with all kinds of disabilities and, in the very safe, one-sided style of an interview, asked them how they coped while coming to terms with their child’s diagnosis. A lot of journaling, yoga and wine drinking was reported, but by resounding consensus, the most comfort had been gained from connecting with other parents. Waiting rooms had set the scene for the start of many friendships and countless more had formed online. One mother, whose daughter has 10

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a rare combo of four genetic mutations, found her ‘tribe’ through the Feeding Tube Awareness Foundation on Facebook. ‘I could post a question and real parents with real kids with real feeding tubes were answering it,’ she recalled. ‘Not some doctor who read a section on it and has only dealt with them in the hospital.’ Another mother, based in the US, told me she’d be lost without social media. ‘There’s a global Facebook page for my son’s condition and I’ve connected with quite a few mums on that page. There are three I’m close with – one’s in Australia, one’s in Dubai and one’s in California. All of us take our kids to an intensive therapy centre in Los Angeles and one day we all got to meet and hug each other. That was so wonderful.’ Some parents I spoke with had gone a step further and started their own communities. Natalie Roberts-Mazzeo’s Miracle Mama Facebook group is a haven for hundreds of special-needs mums. Tanya Savva runs Rest and Reset Retreats that bring parents and carers together – as does the Lucky Mama network, launched by Jaynie Johnson. During a recent Lucky Mama dinner at a Sydney pub I marvelled as a group of mothers, many of whom had never met, dived effortlessly into deep conversations over pinot gris and chicken parmigiana. As my book came together, I realised that I wasn’t really ‘interviewing’ parents. Our chats were casual, honest and uncannily easy. Over coffees, phone calls, Skype connections and emails I was making new friends. One of them was Heather, the mum I’d been travelling to the self-care seminar with, who raced back to my house the second she realised my son was in trouble. Heather kept me calm and got me home just as the ambulance screamed up our driveway. She checked in with us while we stayed a few nights in hospital, asking if we needed company, food, wine, child-minding, anything… as did many other people I’ve met since my son came along. So to Heather, Bec, Jo, Natalie, Tanya, Jaynie and all of the special needs parents I’ve been fortunate enough to befriend, thank you. Thank you for understanding. Thank you for not judging. Thank you for knowing how this experience is as joyful as it is challenging, exhausting as it is enriching. And thank you for helping me realise just how special we have it. Melanie Dimmitt’s debut book, Special: antidotes to the obsessions that come with a child’s disability, is out now. www.sourcekids.com.au

More than just a chair

Give your child optimum support and comfort with the Gravity Chair.

Designed with a supportive foam positioning system the Gravity Chair is light, portable and simple to use and suits a wide range of postural needs. Enjoy knowing your child is comfortable, with the peace of mind that they’re correctly supported.

N EW

Call 1300 543 343 to chat to the comfort experts, email solutions@medifab.com or visit www.medifab.com.au/products/indoor-seating/gravity-chair

Ask about ‘Farmability’ Enquire now about our new ‘Farmability’ Animal Care program! Sunshine Butterflies is a registered NDIS provider and disability support service, located just mins from Noosa, offering unique daily respite, educational, recreational and life skills programs for people living with disabilities, at our unique 5 acre property ‘Our Backyard’.

Call 07 5470 2830 for more info. www.sunshinebutterflies.com.au

Engaging early readers of all ages and abilities Illume Reading is a suite of resources designed to engage and motivate students and to help them succeed in reading.

DEVELOPING ESSENTIAL READING SKILLS • HIGH FREQUENCY SIGHT WORD RECOGNITION • EXPLICIT PHONICS INSTRUCTION • READING COMPREHENSION SKILLS Help your child to realise their potential and become a successful and confident reader.

www.illumereading.com.au

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FRIENDSHIP

SUPPORT AND SOCIAL GROUPS

SUPPORT AND SOCIAL GROUPS FOR YOUR SPECIAL NEEDS JOURNEY THIS SPECIAL NEEDS PARENTING LIFE CAN SOMETIMES FEEL LONELY, BUT WE CAN ASSURE YOU THAT THERE ARE PEOPLE OUT THERE WHO ‘GET IT’. HERE’S A QUICK OVERVIEW OF JUST A FEW OF THE GROUPS AND GATHERINGS (REAL WORLD AND ONLINE) TO HELP YOU BUILD BONDS AND SUPPORT NETWORKS FOR YOU AND YOUR CHILD.

SYNDROMES WITHOUT A NAME - AUSTRALIA SWAN provide information and support to families caring for a child with an undiagnosed or rare genetic condition. They have a closed Facebook group you can join after filling out a membership form on their website. They also hold awareness/family fun day gatherings, morning tea meet-ups and other social events in Victoria and Queensland.

www.jacksbutterflies.com.au

swanaus.org.au | 0404 280 441

BENEVOLENT SOCIETY

JACK’S BUTTERFLIES

As well as traditional support programs, the Benevolent Society has an active program of events in NSW, ACT, QLD & SA, including supported playgroups, family fun days, workshops and talks.

Jack’s Butterflies is another organisation offering support to families of children with a life-limiting rare disease. Recently launched

A second in the life of a special needs mum...

in Queensland, they also extend their services to those families who have sadly lost their child who had a rare disease. Services will include ‘Jack’s Club’ support groups as well as Butterfly Club - youth programs for all children in the community – regardless of their association with rare disease.

www.benevolent.org.au

HOW DO I... Prepare for NDIS Review? Get questions answered, when I need them to be

Safely store sensative images from curious eyes?

Track our family journey... the good, the tough and the amazing?

LUCKY MAMA LUCKY MAMA is a new initiative and is about connecting and empowering mamas around Australia who are lucky to mother a child with a diagnosis, but aren't defined by it. Currently Sydney based they run retreats and mama meet up nights out to help facilitate meaningful connections between special needs mums. www.instagram.com/luckymama_ aus

CARERS AUSTRALIA Carer support programs are available in each state via Carers Australia, please check out the relevant website for your state – their websites can be found here www.carersaustralia.com.au/ about-us/contact/

PLAYGROUP AUSTRALIA – PLAYCONNECT & PLAY TOGETHER PlayConnect Playgroups are designed for families of children aged 0-6 years who have unique needs associated with having an Autism

Spectrum Disorder (ASD) or autismlike characteristics in communication, behaviour or social skills. Play Together is a two-year project aimed at promoting inclusivity and connection for people with disability to community playgroups. playgroupaustralia.org.au/ national-programs

THE TREEHOUSE, GEELONG A non-profit group run by families living with autism for families living with autism. With the support of the YMCA Geelong, The Treehouse was established in 2011 by parents wanting to acknowledge and act upon the need for a local ‘whole family’ friendship and support network. They offer support groups, social groups for all age ranges (kids & adults), family fun days and much more. thetreehouse.org.au

MY TIME MyTime groups are a place to socialise, to discuss, to get information, and to support and

be supported by other carers. Play helpers keep members’ preschoolage children engaged with. MyTime facilitators make sure group discussion is open and inclusive, help members choose what they would like to discuss in their groups, and can also provide reliable resources and help organise speakers and activities. Find your local group at www.mytime.net.au/groups

Find them on Facebook: THE MIRACLE PROJECT MIRACLE MAMAS An online community formed and run by Natalie Roberts Mazzeo. Natalie has created a safe online space for special needs mothers away from the external noise to connect with others who are travelling along a very similar motherhood journey. The group overview states - Some days we just need an extra boost, a vent, a cry, a laugh and here is your support crew.

from people who have walked the NDIS path before you then these two Facebook groups could help. Both groups are highly active with over thousands of members and questions being asked and answered. www.facebook.com/ groups/239631286154106/ www.facebook.com/groups/ NDISDiscussions2018/

Also on Facebook look for: Special Needs Kids Australia @specialneedskidsnsw Cerebral Palsy Parents Australia @Cpparentsaustralia/ T21 Mum Australia Network @t21mum/ Autism Parents Australia @autismparentsaustralia Down Syndrome Victoria Parents @Downsyndromevic Down Syndrome Queensland Support Group Parents of Children With Cerebral Palsy (Australia)

NDIS INFORMATION

ASD/Autism Support Group for Aussie Mums

These aren’t really social groups, but if you need support and answers

Fragile X Association of Australia Group - @fxaaust

It has never been easier for families and supports to stay connected while collecting and sharing information on your child…

Compile reports, notes and evidence in one place, as they happen across the year. Store, convert to pdf and send at the tap of a button, safely and securely to your support team.

The waitlist can be long, the questions burning and behaviours escalating. Connect with both international and locally vetted providers – NOW. Some partners ask a small fee, whilst others welcome a discretionary payment for the support they provide.

Move relevant photos and video to a fully secure app, eliminating concerns of beautiful family moments mixing with functional images used as evidence along the way.

The app is free to get started on. No trials, no subscriptions ever! Our valued partners, supporting our journey:

www.helpa.app

As a keepsake to celebrate success, a diary to document challenges or a vault to securely house vital documents, Helpa is here to support, along your journey.

FRIENDSHIP

UNDERSTANDING BULLYING

UNDERSTANDING

G N I Y L L U B

BY TANYA CURTIS, BEHAVIOUR SPECIALIST, FABIC

Bullying is an increasingly relevant issue to many people in our society. Whether it be in the school setting, home or wider community, many people find themselves either being bullied or themselves using bullying behaviour. Children and adults with disabilities are a particularly vulnerable group and a recent national survey found that more than 56 per cent 14

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of students with disabilities had experienced bullying over a 12-month period. The reality is, any case of bullying is about two people who are experiencing their own difficulties in life and both the “bully” and the one being “bullied” require support.

Why are some people more likely to be targets to bullying? A bully will seek out people they see as weaker than them or they see as a threat in some way. Being ‘weaker’ than the bully doesn’t necessarily mean physically – it’s often how you feel about yourself that counts. If you feel and come across

to others as self-confident and happy with yourself you are less likely to be a target. Bullies seek out those who come across as weak, easily controlled by another or are vain and big-headed; i.e those who display victim-like behaviour.

Why do some people bully? Bullies often feel as though they are not totally equipped to respond to parts of their life. For example, some who bully may feel: - Unstable at home / or have unmet needs from key people in their life. www.sourcekids.com.au

are not around it

A bully bullies in an attempt to regain control over something or anything in their life. If they can control your emotions, feelings or behaviours, they feel like they have got some control back!

TIPS TO REMEMBER: 1. W e are all responsible for our own behaviour choices. We are unable to change the behaviour of any other person (i.e., the person bullying) but we can change our own response and behaviours we choose to use. 2. R eacting to another person by attacking them back is allowing them to see that they are successfully impacting you – you are presenting as a victim and giving them the outcome they wanted – a reaction. The bullying behaviour wins this round and the target ‘loses’. 3. M ost importantly, you are an awesome, amazing lovable being – no words or actions from any other person can EVER change that. Stay connected to this and you will feel no one can influence you and how you feel about you.

- Like they are struggling and feel like a failure with their school work. - Like they want to have friends but keep getting rejected. They then develop a pattern of behaviour leading to guaranteed rejection ... this way rejection is within their control as they have ensured it WILL happen by their behaviour choice! - Like the target is a threat or competition to them in some way. For example: - you might take my friend away from me or you’re better at school work than me, you always beat me at running etc.

• Always seek out another person - one of your peers or a trusted adult. This way you are not alone with the bullying behaviour

It’s important to note that this is not an excuse for bullying behaviour, rather an understanding of WHY someone is bullying.

How to spot a bully Bullies look just like everyone else! They can be small or big, tall or short, quiet or loud – the only thing they all have in common is that they’re trying to get a reaction from another person. They may be trying to control your emotions and reactions by hurting you in some way – either physically or emotionally. If someone is doing things on purpose to try and make you angry, sad, frustrated, it is likely they are trying to bully you.

How do I know if someone I care about is involved in bullying in some way? It’s important that there’s an honest and open relationship between adult and child so that they are comfortable talking about what’s happening in their life. Being non-judgemental is crucial here. Without this environment a child is less likely to open up. Keep an eye out of changes in behaviour that might indicate the child is struggling with something. Signs may include: - Any behaviour that is not this person’s norm. - Feeling sick before going to a place where bulling behaviour might be. - Withdrawn and held back. – Intense emotional responses to things that don’t seem a “big deal”. When changes in behaviour occur, we need to foster a supportive environment to help understand from the child’s perspective what is going on in their life.

STOPPING THE BULLYING - DOS AND DON’TS

• Keep telling an adult until you get the right help • Act “self-assured” and “confident” - Remember you are an awesome, amazing, lovable being. No one can ever change that.

DO NOT

• React to the bullying behaviour in any way. This gives them what they want – a reaction from you • Stay with the bullying behaviour • Go to an isolated place (toilet blocks, oval, bushes) • Keep your bullying experience a secret • Do not act “cocky” or “unsure” • Don’t believe the message that the person is sending via their bullying. This is only a reflection of them and how they feel about themselves. Adapted from the Understanding Bullying Factsheet from Fabic. Fabic is a Multi-Disciplinary Behaviour Specialist Centre that offers a complete range of services to support children, teenagers and adults to develop the understanding and life skills required to live their full potential. In addition to in-person workshops and sessions, Fabic's services are predominately available online so are available to all no matter where you are. Call 07 5530 5099 or visit www.fabic.com.au

BEHAVIOUR SPECIALIST

MU LTI- DIS CIP LIN A RY CEN TR E B R I SB A NE | G OL D C OA ST | L I SM OR E ON-SI T E | ONL I N E

ServiceS

we offer:

D Behaviour Specialist Services D Speech Pathology D Occupational Therapy D Psychology D Counselling D Staff Mentoring D Consultancy Services D Workshops D Assessments

Support with:

D D D D D D

Anxiety Anger Social skills Emotional regulation Relationships Supporting people to develop skills to respond to life

D And so much more

• Offer zero response to the bullying behaviour • Always go away from the bully behaviour - it’s easier not to respond when you

F o r FREE B eh avio u r R es o u rces vis it o u r w eb s it e w w w .f a bi c .c o m.a u in f o @ f ab ic.co m.au | 0 7 5 5 3 0 5 0 9 9

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Discover your village "There is no replacement for connecting face to face, allowing children to develop social skills and interactions in a supportive environment. Friendships begin through cups of tea and sharing picnics, whilst children explore and discover the world around them." - Playgroup Parent

Visit Call

playgroupaustralia.com.au 1800 171 882

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ISSUE 21

SPRING 2019

www.sourcekids.com.au

BY RACHEL WILLIAMS

FRIENDSHIP

with a little help from OUR FRIENDS THERE IS NO I IN TEAM. IT TAKES A VILLAGE TO RAISE A CHILD. I GET BY WITH A LITTLE HELP FROM MY FRIENDS… You get the drift - we are all better when we are surrounded by people who have our back, who raise us up and inspire us to shine a little brighter. The importance of friendship and social support groups can’t be underestimated - it is essential for our physical and psychological well-being. Perhaps, it’s even more imperative for people in the special needs community. There are so many examples of awesome individuals and groups doing amazing things for building community within the disability sphere. We have found four unique individuals who unite others for the greater good and these are their stories.

PROFILES

Brydi Saul and Josh Brass may be young but their strength of character, resilience, attitude, ability and wisdom is well beyond their years. Josh and Brydi are both 9 with aspirations to represent Australia at the Paralympics. The pair has developed a strong bond through their work as ambassadors with the ICANIWILL foundation - a position they both believe has made them better people. Josh hails from Queensland and was diagnosed at birth with Sacral Agenesis/Caudal Regression Syndrome - he was missing multiple vertebrae, his tail bone, knee caps and a kidney. His mum Abbi says that Josh showed incredible strength from early on - he’d perfected using a wheelchair by the age of three and a year later moved from a standard paediatric chair to a suspension chair and started dare-devilish sports such as WCMX (going to the skate park)”. He actively participates in track athletics, swimming, tennis, triathlons, 5km races, Spartan Races (obstacle course racing), surfing with the Disabled Surfers Association and attends weekly Personal Training sessions. “Of course occasionally you might see him at the skatepark,” laughs mum. His motivation is “to win medals” and wants to be a model or actor with his own TV show or YouTube channel. If that’s not enough aspiration, he also wants to be a geologist, archaeologist or a marine biologist. But for now this “stubborn, confident, resilient” kid is helping ICANIWILL to prevent bullying something he has never encountered. “Being a part of ICANIWILL has opened Joshua’s eyes up to a whole new level of bullying. As an outsider you don’t know the full extent of what some of these kids go through. The physical, mental and emotional bullying is horrendous and has become an epidemic in today’s society,” Abbi reports.

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“He now knows how to spot bullying at school, how to talk to the students involved and how to communicate to the teachers to help eradicate or at least minimise it. “He has the voice, the platform and is in a chair so knows firsthand how being different physically can change others’ perceptions of you.” Brydi wasn’t so lucky. She was badly bullied. The fellow Queenslander was born with a congenital spinal hemangioma at T11-L4 and had spinal surgery at 3 days old to remove the tumor and some parts of her spine. She was told she would never be able to sit up straight, let alone walk. Fast forward to four and she was a pro at pushing and developed a love of sport from her triathlete parents and watching the Paralympics. She now competes in triathlons, wheelchair racing, Spartan and Tough Mudder events and has plans to represent her country one day. “She has always shown determination and drive,” mum Toni says. “It became apparent she was not going to give up on her goal of being a superstar when she was only about two - she just does what she has her heart set on with a ‘no limits, no such thing as can’t, attitude’.” Her success is in spite of those who were cruel.

“It’s also important not to let negative people crush your dreams,” Brydi says. “ Reach out and talk to someone when you need help. Don’t let the negativity or someone’s opinions of you bring you down!”

There is no manual for parenthood and definitely no fail proof instructions for dealing with an autistic child. And when it comes to dads, there seems to be even less documentation about their experiences. Finding different dads to talk to and share their stories has been a cathartic experience for Nicole Rogerson, who produced the documentary Dad: a film about fatherhood and autism - to help those on the journey. The film was released in October, 2018 with screening premieres in Sydney, Melbourne, Brisbane and at Parliament House in Canberra. Nicole, whose adult son Jack has autism, says it can be a challenging journey because autism doesn’t announce itself in the delivery

room. “You can’t detect it from a blood test or any type of prenatal screening. In fact, children with autism are typically born as healthy, bouncing babies with 10 fingers and 10 toes. Their parents take them home from the hospital and all is as it should be - a happy family. “Sometime around 18 months to two years later, parents might start to notice signs that their child’s development is not like that of children of a similar age. “Parents tend to start down a well worn track to work out what is affecting their child’s development.   “In my experience, mums and dads often have different approaches during this period. “Ok, so I am over generalising here but typically women tend to be better ‘sharers’ of their emotions. I mean, we just are! From the beginning, there are constant formal and informal structures that allow women to access support as a new parent, from mother’s groups, the early childhood centres, to pre-schools. If we need support, we seek it out and it’s easy to find. “I just didn’t find this was true for dads.”

“She was first involved with ICANIWILL as a recipient of a wish... she was being severely bullied at school and was suicidal,” Toni recalls. “It was a hard time and we struggled but as soon as we met Conan from ICANIWILL all of our lives changed! Brydi was granted a wish to meet one of her Paralympic idols and that was Brendan Hall! She got to go swimming with him and learn from him and he ignited her love for swimming again! “Through learning to being more resilient and how to be strong again, she turned herself around and is now sticking up for others!” Both Brydi and Josh say it’s vital to surround yourself with positive people. “Positive people get things done,” Josh says. “Positive people are happy. Positive people see the sun on a cloudy day. Positive people make you smile, and when you smile you feel better about yourself and the others around you reflect your smile. Did you know positive, optimistic people live longer?” 18

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www.sourcekids.com.au

Nicole is speaking from experience and with authority - she has spent 15 years running an early intervention centre and is the CEO of Autism Awareness Australia. To ensure that fathers felt supported with good information and advice, she set about producing content for AAA. “We brought together 12 gorgeous dads of children with autism, who share their stories and bring a raw and brutally honest account of this type of graduate level parenting. Sharing their successes, feelings and struggles, the film is full of wonderful advice and will hopefully be an invaluable gift to dads who

are newer to the world of autism,” Nicole says. “The fathers in the film come from a wide range of backgrounds, locations and ages. “Seeing these fathers talk about their journey is both emotional and inspirational.”  Nicole says the response has been brilliant. The film has had over 40,000 views on YouTube and now lives on its own dedicated web site - www.dadfilm.com.au. It is critical, she says, for dads to have a support network and know that it is okay to speak out and seek help. “Often in these situations it is one parent who kicks

into action mode, and that is typically mum,” she reports. “The other has to return to work and keep everything ticking over and that is typically dad. “That can often make men feel very isolated from the whole process and unable to help, or not know how to. There is no right way to manage these situations in life. “Everyone's experiences are all so personal, there isn't a manual. “However, we felt that father's telling their stories, the good and the bad, the struggles and successes, then that may help other father's figure out their role in all of this.”

Parents of children with special needs often gravitate to those with a shared experience. One Sydney entrepreneur is harnessing the comfort, reassurance and respect felt between people on a similar journey. Jaynie Johnson is the founder of Lucky Mama, a new organisation offering retreats and nights out for special needs mums. With husband Nathan, Jaynie has children Willow, 9, Dare, 5, and Rocky, 2. Dare has Down Syndrome. “We feel like the luckiest family in the world to be part of such an amazing community,” Jaynie says. The former primary school teacher runs a design studio and recently started Lucky Mama - to celebrate and facilitate meaningful connections and community for mothers of children “who have a diagnosis, but aren’t defined by it”. Jaynie says that after Dare’s unexpected diagnosis of Down Syndrome, her family received deep love and support from family and friends. “We have been blessed to have felt their unwavering support continually throughout the years,” Jaynie says. “Still, while in hospital with

baby Dare, we were needing to feel connected to families that looked a little more similar to our new found unit. “We were craving information, but not from a textbook — we wanted real-life stories and connections.” Jaynie recalls making online friends with people who were “real-time, authentic, whole-hearted individuals” and went to the US to attend a retreat with some of them. The journey led to the birth of Lucky Mama in Australia and it will be expanded to New Zealand next year. Two retreats are held in March and August each year - creating environments and moments where “Lucky Mamas” are able to connect, relax and be inspired. Dinners are also held around the country to allow for a fun night out. “We have big plans to help families,” Jaynie says.  “We are currently just hoping to help mums feel connected and supported and to give them an opportunity to find a place to be real and not feel alone. A place where it isn’t too

serious, but just a bunch of fun really. “The biggest ‘wow’ moment was at our last dinner when a mother told me she had been waiting 14 years for this dinner. That blew my mind thinking that for so long she hadn’t been able to find other mums with a shared experience.”

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Unique, fun and practical products to improve the lives of children with disability

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ISSUE 21

SPRING 2019

FRIENDSHIP

BY TRICIA MUNN

DIGITAL WORLD

ONLINE RELATIONSHIPS

and social media safety

SOCIAL MEDIA, APPS AND GAMES CAN BE A UNIQUE OPPORTUNITY FOR CHILDREN WITH A DISABILITY TO: • have a voice in a world where they are sometimes not heard; • find connection, networks and support through community groups; • enjoy chat rooms; or • play in a virtual world that gives them opportunities they may otherwise not experience.

The use of technology can also be a pathway for offering a child with special needs more independence into their teens and young adult life.

If information is easily gathered by the wrong people, it can be used to gain the trust of or exploit your child.

However, there is no denying that offering any child an internet enabled device is a decision that most parents face with an element of fear and anxiety. That fear and anxiety can also be significantly more confronting for a parent who knows their child may have increased vulnerability in the online world.

LESS VISIBLE CONCERNS OF SOCIAL MEDIA

INCREASED VULNERABILITY For EVERYONE the possible negative outcomes (or risks) are the same. The only thing that changes is how vulnerable you are to those outcomes at any given time. Some children may have increased vulnerability online due to a possible lack of cognitive ability to filter personal information from information that they share online. Some may also experience a reduced ability to recognise authenticity of some of the content they are reading or exposed to. Digital literacy and critical thinking are crucial skills required for a social media user to evaluate content as to what response is appropriate and, in some circumstances, whether a response is required at all. Many children find this element of social media difficult to navigate, without any additional challenges..

THE POTENTIAL RISKS OF SOCIAL MEDIA • Exposure to or creation of inappropriate material; • Creation of a poor or vulnerable online presence (your digital footprint); • Identity theft (your identity being stolen or a fake identity being used to exploit you); • Cyber bullying; and • Predators

HOW YOUR CHILD BECOMES VULNERABLE TO THESE RISKS A person’s use of social media can inadvertently put them at risk because every interaction on a site or an app can leave information that may give away unintended details about your life. Therefore, the biggest risk factors on social media are: • The content or information that is present online about your child • The ability for the wrong people to access that information 22

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Impacts for vulnerable social media users and their family, may not just be the issues that can be seen: • The uncertainty a parent feels about potentially inadequate privacy and security settings on their account. • A child being confronted with aggressive, toxic, or inappropriate communications and not being equipped to manage or de-escalate the fallout. • Not recognising inappropriate or bad behaviour early enough to manage and minimise the damage. • Social media issues impacting desire or enthusiasm to attend school, work, or other necessary activities. • Mental health issues stemming from or exacerbated by social media

ASSISTING YOUR CHILD TO USE SOCIAL MEDIA IN A POSITIVE WAY Identify positive outcomes your child could enjoy from social media use: It is important as a parent to understand your child’s motivations for using social media in order to not inadvertently impede your child from achieving their social media goals through restrictions that you apply. Particularly if the restriction is possibly unnecessary or could be applied in a different way, allowing your child to still achieve their goals. The reason for this is simple, if a restriction is put in place that impedes your child from reaching their goals they may simply remove the restriction rather than have a discussion about it, leaving them vulnerable or at risk. Create a plan with your child to achieve their goals. If there is an understanding of what your child wishes to achieve then there is also a perceived interest in assisting your child to achieve their goals. Therefore, parent and child can work together to create a plan to apply safety measures that still allow the child to achieve their goals. The child may also ask for assistance in reducing or applying alternative safe restrictions that still allow them access to the features they wish to access, if a setting is impacting the use of a desired feature.

ASSISTING YOUR CHILD TO USE SOCIAL MEDIA AS SAFELY AS POSSIBLE Remember the two most crucial risk elements (content and lack of security) www.sourcekids.com.au

As information that is available and the ability to access that information is the biggest risk for social media users, it stands to reason that the two most important elements in reducing risk for young people on social media is to apply effective privacy & security settings and to teach them to think before posting. Parents need to ensure that they assist with applying the privacy & security and are continuously discussing and modelling appropriate social media use. Get educated about security settings on all sites your family is using Social media safety awareness sessions are held at schools most years. Parent attendance is reported to be extremely low. Parents should attend regularly as the sites and the information is constantly changing, and information that wasn’t relevant to you last time, may now resonate.

Workshop managing abuse with your child Quick and efficient strategies for managing abuse is critical to minimise the harm to the victim. Workshopping the options that a child has to manage abuse online allows the opportunity to teach and practice steps that could be taken in different scenarios of online abuse. When a child practices the steps, it gives them further opportunities to remember the content so that they can quickly recall and apply the steps they need to take when a toxic or abusive situation arises on social media.

APPLYING PRIVACY & SECURITY Adding privacy is the act of choosing who sees what on your social media accounts. Even though you choose to connect with someone, there is still information that they should need to ask you for, such as other ways to contact you and when your birthday is.

The most important step is to upskill from an expert on what you need to be adding privacy & security to and how to actually apply that knowledge to the sites you are planning to use or allow your child to use.

You may choose to give them this information, but it is not safe to have it sitting visible on your account just in case you accidentally add the wrong person, or one of your friends accounts is hacked and a criminal gets access to the inside of your personal account.

Offer open non-judgemental discussion to allow children to learn to identify predatory and manipulative behaviours.

Three steps you can take to add more privacy to your accounts:

Showing an interest in what your children are doing and what they want to achieve gives you the opportunity to continually remind them of things that could go wrong and also has you close to the action when things go in the wrong direction.

your account for them to access such as phone number, email address and your “friends” list.

INCREASING SECURITY Increasing your security makes it more difficult for someone to break into your account and pretend to be you. If someone is able to login to your account, remember they will also be able to see into your friend’s private accounts that they have trusted you to see. Three steps you can take today to increase your security: 1. E nsure you have a password or pin number on all of your devices that are logged in to your social media accounts 2. A pply good strong passwords to all accounts. Use a long combination of lower case letters, capitals, symbols and numbers. Never use the same password on more than one account. 3. A dd 2-factor authentication on all accounts possible.

1. C heck what people can see if they have not been added as a contact on your account. 2. M ake decisions about content that people who are connected can see. 3. E ven though people may be added as a friend, it is still not safe to leave personal information on

Eyes Open Social Media provides education about the risks associated with social media use to families, schools and community organisations. Schools are welcome to reuse the information contained in the article above and can visit www.eyesopensocialmedia.com.au for more information and resources. You can also call 0402 594 108 for a chat.

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ISSUE 21

SPRING 2019

FRIENDSHIP

BY DR SUSAN LOWE

NAVIGATING PLAYGROUND ISSUES

BEING A FRIEND

in the playground

Figuring out how to be a learner in the classroom can be challenging, but problem solving how to be a friend in the playground can be even harder work for many children.

WHAT DO WE KNOW ABOUT EFFECTIVE WAYS TO HELP OUR CHILDREN? In 2017, a comprehensive review by O’Connor and colleagues of evidence-based approaches which were associated with successful outcomes for social and emotional learning identified 4 core principles. • Sequence a range of activities in a logical order • Embed these activities in active, dynamic learning which provides children with opportunity to practice friendship in a real-life context • Focus on one aspect of friendship at a time • Teach a specific skill, rather than general skills Learning to be a friend requires cognition. Social cognition, required for interactions with other children, is the ability to attend to what is happening in the playground; the ability to remember expected social behaviours; and then to plan and problem solve; and finally execute these behaviours in specific interactions and games, self-regulating thoughts, feelings and actions. Researchers are now exploring how ‘soft’ skills such as these may impact positively on both academic tasks and social interactions.

HOW CAN WE SUPPORT CHILDREN IN LEARNING TO BE A FRIEND? We can teach children cognitive strategies. These are the thinking tactics children need in the ‘here and now’ to match their interaction with another child and the game being played. What thinking strategies for attending does a child need in order to be a friend? A child needs to notice, by using his/her senses, to look and listen to what the other children are saying and doing; to have a ’just right’ level of arousal and alertness (i.e. not be sensory overwhelmed by all the noise and movement); to stay focussed and not wander off; to switch attention between banter of friends and the skill required for the game; What thinking strategies for remembering does a child need in order to be a friend? A child needs to remember where to go to find a class mate; remember how to join in; remember rules of games (e.g. bowler has 10 throws then we switch to a different bowler) and remember facts (e.g. everyone gets ‘out’ sometimes); 24

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What thinking strategies for planning does a child need in order to be a friend? A child needs to know the goal of a game; identify obstacles (e.g. getting ‘out’ meant that the ball was out, not that the kids hate me); anticipate (e.g. what might happen if I lose my temper?); problem solve (e.g. what if I can’t find my friend?).

WHAT DOES THIS LOOK LIKE IN PRACTICE?

WHAT MIGHT EXPLICIT TEACHING OF A SPECIFIC FRIENDSHIP SKILL LOOK LIKE? Here’s an example of what a child’s playtime plan could look like:

My Playtime Plan

We identify which specific cognitive strategies a child is struggling to use by observing the child with friends in the playground. For example, Peter wants to join in the chasing game but he is not listening to the rules the other children have made up for today’s game. His mind is focussed only on one thing: being ‘in’. He starts running and tagging without remembering how to join the game. He doesn’t know today’s game plan which is to tag 3 kids then switch to a different tagger. We sequence a number of specific strategies which we want to teach Peter, embed these strategies in fun playground activities, teaching one strategy at a time.

WHAT MIGHT EXPLICIT TEACHING OF A SPECIFIC COGNITIVE STRATEGY LOOK LIKE?

Before I go out to eat and play I need to plan my playtime. I need to decide…

Who do I want to play with?

What are they playing or what do I want to play?

• Modelling (my turn your turn) so that Peter can imitate you • Task analysis, breaking the teaching down into small essential steps • Verbal prompt e.g. What do you do first? Next? After that?

Where will we play?

• Specific verbal praise for a desired action e.g. Great stopping before you stormed into the game! You looked then listened to figure out how to play. I’m proud of you stopping. • Practice! Practice!

What rules do I need to remember?

• Visual prompt such as below

Look at how the other kids are playing

Listen to what the other kids are saying

Join in and play!

www.sourcekids.com.au

When a child is feeling anxious or angry, feelings will overtake thinking. So, for children to engage socially with others, we need to first help them regulate their own emotions. This begins with emotional literacy. Teaching children that feelings are OK. We all have feelings. Sometimes these feelings are big – a lot of anger. Sometimes these feelings are small – a little bit angry. Feelings do change – in the same way that clouds move across the sky. However, we can be in control of our feelings. Our feelings don’t have to control us. We can help our feelings to move – in the same way that the wind moves the clouds.

BODY TOOLS MIGHT BE

BRAIN TOOLS MIGHT BE

We can teach children breathing tools, body tools and brain tools.

BREATHING TOOLS MIGHT BE

Author, Dr Susan Lowe is the Owner and Principal Occupational Therapist at Skills for Kids in Penrith, NSW where occupational therapists and speech language pathologists provide assessment and intervention services for children and teens. In relation to this article, the therapists teach children 1:1 during school terms and in Playground Skills group programmes during school holidays how to regulate their emotions and how to interact socially with friends. Thanks to Dr Julianne Challita, Senior Occupational Therapist for contributing to this article.

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A 7020 FR

For more information, visit the website www.skillsforkids.com.au OR contact 02 47390267.

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SPRING 2019

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www.sourcekids.com.au

FRIENDSHIP

ASSISTIVE SOCIAL SKILLS APPS

Apps to help your child with social skills

The development of social skills can be particularly challenging for many children with a disability, but like so many things these days, there’s a multitude of apps out there that can help you help your child. Here’s a roundup of a few of our favourites to help children interact with others, identify & manage emotions, develop relationships and more...

SOCIAL ADVENTURES The Social Adventures app provides clinicians, teachers and parents with a treasure trove of activity descriptions for teaching social skills and friendship. Children ages 3-13 with social and social anxiety will gain confidence and success in navigating the rough waters of relationships. You can use the app to teach: initiating interactions, maintaining interactions, interpreting nonverbals, experiencing humour and more.

TOUCH AND LEARN EMOTIONS Touch and Learn is a powerful gaming platform and this app is focused on helping kids read body language and understand emotions by looking at gorgeous pictures and figuring out which person is expressing a given emotion. The game is customisable so you can add emotions and actions you’d like to focus on.

SOCIAL DETECTIVE Discover how to become a better social thinker with Social Skill Builder’s You Are A Social Detective Beginner app. This interactive App teaches children how to appropriately engage in everyday situations. It teaches them how to use their eyes, ears and brain to make smart social guesses and investigate clues to see how others’ emotions and responses are connected to their own behaviour.

MIDDLE SCHOOL CONFIDENTIAL This book series for 8-14 year olds is also available as an app. A one of a kind fiction/non-fiction hybrid, Middle School Confidential is part full-colour graphic novel and part smart talk life skills. Each book focuses on a common stumbling block on the road to high school and beyond. And in each one, readers follow the adventures of a group of 7th graders who are just trying to navigate through the ever-changing drama taking place in their friendships, their families and, of course, at school. The app enables readers to zoom right into the story world. With beautiful full-colour illustrations and richly layered audio made up of movie-like sound effects and music, it will challenge teens to think about their emotions and behaviour in new ways and encourage them to make more respectful, cooperative choices at school and at home.

TURN TAKER - SOCIAL STORY AND SHARING TOOL Turn taking is a key social skill for all children, and learning to appropriately take turns is imperative to create and maintain social relationships. Turn Taker uses visual and audio cues to facilitate turn taking and sharing for any child. The app also includes an illustrated social story about game play and sharing.

AVOKIDDO EMOTIONS Explore feelings in an open-ended free style playroom! These huggable pets have personality to spare and are animated with realistic multi-faceted reactions to a whole host of scenarios. Pretend play with over 110 objects, foods, toys and musical instruments allows you to find out how to please your lovable pets while helping develop social and emotional awareness and put names to the many emotions and reactions

HOW WOULD YOU FEEL IF... This colourful, educational social skills app has all 56 illustrated picture flash cards (plus audio of each card text) from the How Would You Feel If ... Fun Deck® by Super Duper® Publications. Select the cards you want your child to see, and have them discuss their feelings about a variety of situations. The prompts include questions like, “How would you feel if … you forgot to study for your spelling test?” and “How would you feel if … your favourite football team lost?”

KLOOG 2 RETURN TO ZUGOPOLIS FOR IPHONE This is the second app in the Social Skills for Autism series and continues the journey of the alien character Kloog, through the social world that he finds difficult and challenging. This app contains lessons which teach life and safety skills suitable for all children, but which have been laid out in an autism friendly manner. It offers solutions to everyday difficulties experienced by all children. It looks at friendship and explores areas such as: What is a friend; Developing friendships; and how to recognise and respond to bullying.

EMOTIONS FROM I CAN DO APPS Emotions from I Can Do Apps is an educational tool designed in collaboration with a Speech Language Pathologist that focuses on helping individuals identify different facial expressions using real faces and test their understanding of emotions. Emotions include - happy, sad, scared, surprised and angry.

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ISSUE 21

SPRING 2019

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FRIENDSHIP

THE ROLE OF SIBLINGS AND FAMILY

The sibling bond – first and forever friends I DON’T REMEMBER LIFE WITHOUT MY SISTER. I WASN’T EVEN TWO WHEN SHE WAS BORN SO EVEN THOUGH SHE IS YOUNGER THAN ME, ALMOST EVERY CHILDHOOD MEMORY INCLUDES HER. SHE WAS MY FIRST FRIEND AND REMAINS TO THIS DAY MY BEST FRIEND. BY ARIELLA LEW

Siblings becoming best friends when they are adults is the dream of many parents who choose to have more than one child. While statistics show that 80% of children have a sibling, of those 80%, probably not all do end up best friends. Dynamics will vary from family to family and depending on specific circumstances. When a child in a family has a disability, their siblings often become their closest friends, their advocates and their confidantes from the very start. This bond, whilst it maybe not traditional, is one of the most powerful human relationships that exists.

No matter what the age gap of the siblings and what the birth order in the family, a sibling of a child with a disability somehow knows innately that they are different. Parents can help siblings to understand the realities of the family dynamic by being open and honest with the other children in the family about the challenges that the disabled child faces. These can include struggles with mobility, communication, behaviour or self-care amongst others. Social stories can be a very powerful way to do this. Using conversational reading when you go through the ISSUE 21

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...encourage these incredible young people to have their own interests and passions and allow them a safe space to express what they are feeling when they need to. story allows your child time to ask questions and feel comfortable with what you are saying. No one understands the daily challenges that a child with a disability faces better than their parents and, in my experience, no one cares and worries more! Many parents worry as to whether their special child will be accepted by their peers, if society will be inclusive of them, if they will ever be able to form meaningful relationships and wonder what can be done to help them to succeed on a social level. These thoughts are daunting and intimidating and can be very uncomfortable. The good news is that the answers to some of these questions start at home. For any child who has an older sibling, they have been forced to share from the second they were born. They have shared parents, grandparents, time, space and things with another human being without ever being taught how. For children whose siblings are younger, whilst there may be a period of adjustment – they learn quickly and adapt to a world in which another person’s needs matter. The sibling relationship, when encouraged and nurtured, can encompass all that is at the heart of social skills!! Being able to understand another person’s needs, be sensitive to them, to accept and tolerate them is at the basis of all human relationships. Within the family home, there is a unique opportunity to teach these skills in an informal and modelled way. One example of doing this is by prioritising time as a whole family. Activities during these times can be structured, such as playing a game or sharing a meal or partly unstructured, such as going on a day trip together. These different activities can be adapted to take every child’s strengths and weaknesses into account. Here are some examples of how this could work in practice: 30

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• Playing a game forces everyone to follow the same rules and doesn’t allow anyone to have special treatment. However, if your child with a disability would struggle from a coordination or behaviour point of view, consider playing in teams! • A family day trip activity is always going to cater for some of the family more than others but everyone is equally included despite their differences. This makes siblings practice patience, giving to others and possibly prioritising other people’s needs, not only for the siblings of a child with the disability but for the child themselves For example, they may have to wait whilst their siblings go to a part of the activity which their wheelchair can’t access. Learning to communicate with each other is another must in order for relationships to grow and develop. One way to encourage this is through family dinners where each member of the family has an opportunity to speak about their day. If your child is non-verbal or has communication issues, they still get a turn but they can communicate using their method of choice (AAC, signing etc). This sends a message to all your children that everyone has a voice and has a valuable contribution to make - a significant thing to remember in all relationships. At the same time, you are demonstrating that it is vital to both understand and respect people’s differences. By setting times aside for these activities, your children learn to interact as family members on an ongoing basis nurturing an ease of relationship and a sense of relaxation in each other’s presence irrespective of their differences. Your role during these times is simply to facilitate your children being able to explore their personalities as part of the family unit. Making sure everyone has their chance ensures tolerance for each other's differences which is central to the ethos of the relationships you are building and developing.

Despite all of this, there are inevitably tensions between siblings and when a sibling feels that they are getting less attention or being expected to do more, this can become magnified. Very often, the love, friendship, duty and protection that they feel towards their sister or brother with a disability is overwhelming and in these cases they almost never act out towards them. However, resentment can still build. Wherever possible, encourage these incredible young people to have their own interests and passions and allow them a safe space to express what they are feeling when they need to. Where practical, try to ensure that they have 20-30 minutes of non –school time each day without their sibling around. This can be achieved by having different bedrooms; different days for hanging out with friends in the school holidays or after school activities which are at different times. The overall message needs to be that every child in your family has equal importance to you as a parent and to the world. Everyone does better in life when they are given their own time and space to shine. A child with a disability can show they have picked up on skills from home when a sibling or parent is not there to prompt them. By the same token, the sibling of a child with a disability can be a better friend and companion when the expectation is not constant and when they are seeking the contact rather than it being forced upon them. When this break is given, the relationship that develops between these extremely special siblings is nothing short of magical. It is loyal, fiercely protective, loving, inclusive, accepting and tolerant on both sides. It is truly in micro form what we all dream a fully inclusive society to be. Ariella Lew, Bsc (Paediatric Nursing) is the founder of Kids on Track Consultancy in Melbourne: for more info www.kidsontrackconsultancy.com | Tel: 0429 222 670 www.sourcekids.com.au

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FRIENDSHIP

WRITTEN BY THOMASINA WILLIAMS, SENIOR PLAY THERAPIST, HENDERCARE

GUIDE TO PLAY THERAPY

Play as a language Understanding play therapy and the benefits for children PLAY IS AN ENTRENCHED PART OF CHILDHOOD AND IS VITAL FOR HEALTHY BRAIN DEVELOPMENT IN CHILDREN In recent years a focus on early intervention programs for children with disabilities has seen the therapeutic approach of play therapy grow in popularity. More than just ‘child’s play’, play therapy provides children living with a disability a chance to uncover their capabilities relating to their disability, strengthen their social relationships and better express, process and master their emotions. With the help of a qualified play therapist, play therapy is an evidence-based approach which can aid in early childhood intervention. As a developmentally appropriate approach for working with children, play therapy allows a child to ‘play out’ their inner thoughts or real-life experiences. As a child’s linguistic development lags behind their cognitive development, children make sense of their worlds through play and use it to communicate. Play therapists are specially trained in this language and use play to assist children in better expressing and exploring their feelings, needs and behaviours while supporting them to achieve optimal growth and development. The difference between play therapy and regular play stems from a therapist’s ability to assess, understand and interpret the play. In play therapy the child’s language is play and the toys are their words, a good play therapist will be able to understand and communicate through play leading to a raft of social, emotional, behavioural, and psychological developments for the child. Some potential outcomes for play therapy include: • Enhancing and developing relationships, play skills and self-esteem; • Improving social skills and self-regulation;

• Assisting with processing and expressing emotion, cultivating empathy towards others and reducing anxiety and; • Aiding the development of new and creative solutions to problems. Many studies support the use of Play Therapy for children with disabilities, a 2011 study conducted in a special school setting showed children with an intellectual disability (the majority of whom had a secondary diagnosis of autism or developmental delay) experienced measurable improvements by participating in play interventions. Groups involved in the study improved in their overall language skills, behaviour, social skills and goal attainment . With a range of modalities available under a play therapy approach, parents and caregivers can also benefit from this intervention. Where appropriate, the therapist may involve the parent/caregiver in the therapy and provide them with the tools to replicate aspects of the therapy at home. This inclusive approach can further support a child with a disability to overcome some of the everyday social, emotional, behavioural or psychological challenges they face. For parents or caregivers considering play therapy, it is important to be mindful of key criteria to look for when selecting a provider; specifically, the therapist’s qualifications. Currently, there is no minimum qualification to practice as a play therapist, and as a result, some play therapy providers have completed little to no training. It’s essential to ensure when selecting a therapist that they have postgraduate training in play therapy or current registration with a relevant industry body like APPTA (Australasia Pacific Play Therapy Association) or APTA (Australia Play Therapists Association). Once a play therapist is selected, an initial intake interview occurs with the child’s caregivers, followed by an assessment with the child and/ or their family. With the child’s goals in mind, the

therapist will develop a bespoke play therapy program which may be short-term (6-8 weeks), mid-term (8-12 weeks) or long-term (12-24 weeks). The therapist will also consider whether the child would benefit from group or individual sessions to attain their goals. Play therapy sessions are then usually held at the same location and time each week to assist the child in building routine and trust with the therapist. The key to the success of play therapy as an early intervention lies in selecting a provider who will work with your child and family to recommend and implement the right play modality/modalities to help your child reach their goals. With evidence to support the success of play therapy for children with a disability, it is no surprise that this therapeutic approach, which does not require a referral from a GP or specialist, is gaining popularity amongst the disability sector. HenderCare is a Registered NDIS Provider established in 2004. Delivering services nationally (excluding NT), they provide a range of support and care services, including play therapy. To find out more, please call 1300 764 433 or visit hendercare.com.au. 1.

’Connor C, Stagnitti K. Play, behaviour, language and social O skills: The comparison of a play and a non-play intervention within a specialist school setting. Research in Developmental Disabilities. 2011 Feb 1;32(3):1205-1211.

1300 764 433 We’ve been providing care to those with a disability since 2004 and are committed to helping your child reach their goals. PLAY THERAPY

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INCLUSIVE

BY JULIE JONES

SOURCE KIDS

TRAVEL

S A E ID Y IT V ACFOTI R THE WHOLE FAMILY The warmer months are approaching and soon we’ll be shedding the winter layers and heading outdoors to embrace spring and summer. This time of year also heralds the long school holiday break approaching in the distance where little, and big, people need to be entertained. Fortunately, there’s a range of accessible activities to keep kids happy and ensure the sanity of mum and dad (well, assist in staying sane – but no guarantees!).

WATER ACTIVITIES

The benefits of swimming are indisputable and many aquatic centres now offer aquatic wheelchairs, ramp access into the pool, and some are now equipped with hoists. It’s worth enquiring if your local swimming pool offers these facilities or check to see if your holiday destination has them. Acknowledging Australia’s hotter months, many local councils are installing water play at local playgrounds. Some have a water trough, which is cooling and a good activity for side-by-side inclusion with peers. But some councils are going the extra mile by adding splash parks. A child in a walking frame can get in amongst it at the splash park and with some adaptations so can a child who uses a wheelchair. Using a garbage bag or thick plastic to cover wheelchair cushions will make it possible to get wet without drenching a wheelchair. This isn’t 100% guaranteed waterproofing so for those lucky enough to have a beach chair, take that along to the park. Yes, it will draw comments from others but usually admiring ones. Beach wheelchairs have become common place at many Australian beaches. With the understanding that no one size fits all when it comes to equipment, there are some locations which offer a variety of styles of beach chairs. These are usually free to loan from lifesaving clubs and are available on a first come first serve basis.

FESTIVALS

It’s always lovely to be a part of a seasonal festival event in your city and many of Australia’s festivals cater well to people with various disabilities. Sydney Festival offers tactile tours to assist with show context for guests with a vision impairment. Guests can book to do a tour, which varies according to the performance but usually involves being able to feel the props, costumes and set with the assistance of the cast. Select performances have captioning and Auslan interpreters for the deaf community. Accessible seating and access to events is also provided for wheelchair users. The Australian Companion Card is accepted.

Theme parks are joining the accessible movement and now offer a variety of facilities to make a visit easier for guests with a disability. From accepting the Australian Companion Card to installing physical assistance to make enjoying the theme parks easier, there’s been a change for the better in recent years. Sea World on the Gold Coast has offered a dolphin experience designed especially for people with additional needs for some time, but they now have a hoist installed. This assists wheelchair user guests to access the platform to enter the water. Raging Waters in Sydney (formerly Wet n Wild) offers an aquatic chair and adult size change facilities making a day at the park more comfortable and accessible to all.

GETTING OUT INTO NATURE

Although many of us are fortunate enough to live within easy reach of the coast, it’s important to remember the many opportunities there are to explore nature by heading into the bush. The TrailRider is making it easier for people of all ages living with a mobility restriction to access nature. But Parks Victoria are going that extra mile to be inclusive to all abilities. Programs offered include their TrailRider Sherpa volunteers who will assist with using the TrailRider so family members can relax and enjoy the outing too. If you’re keen to get out on the water, an electric hoist has been installed at Patterson River boat ramps to assist wheelchair users to safely transfer in and out of boats. If caving is more your style, Buchan Caves has a Stairclimber available to visitors with a mobility restriction so they can enjoy Fairy Cave (available to children and smaller adults – booking essential). Parks Victoria offer accessible accommodation, a variety of beach wheelchairs and they even have downloadable social stories for visitors to help in preparation for a day out in their national parks. So it’s time to emerge from hibernation because there’s plenty of reasons to head into the great outdoors with so many wonderful accessible experiences on offer.

PLAYGROUNDS Getting together with family and friends is always lovely in the warmer weather but it can be a challenge to ensure a child with a disability is safe and isn’t excluded from the activities. Choosing an accessible and inclusive venue will assist with these concerns. We are lucky in Australia to have a range of playgrounds which have a variety of accessible equipment, are fully fenced and some now have a hoisted bathroom facility with an adult size change table.

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ES MAINSTREAM SERVIC

NDIS

NDIS TERMS EXPLAINED If you’re not used to it, the NDIS can be really hard to understand. The language used can often be confusing and intimidating and everyone you ask can have a different interpretation of what things mean. The good people at Leap in! have helped us out by taking us right back to the beginning with a short and practical glossary of some key NDIS terms that often leave people stumped.

NOMINEE

S I D N INFORMAL SUPPORTS

CONSUMABLES

PROVIDER SUPPORT COORDINATOR CAPACITY BUILDING

G ASSISTIVE TECHNOLO

NDIA

INFORMAL SUPPORTS

ASSISTIVE TECHNOLOGY

The National Disability Insurance Agency (NDIA) is a Commonwealth government organisation whose role is to implement the National Disability Insurance Scheme (NDIS).

Informal support refers to unpaid support given by family members or friends.

Assistive technology is any device or system that allows you to do something that you wouldn’t be able to do without it (or can be used to increase the ease or safety of things that you do).

NDIS National Disability Insurance Scheme (NDIS) is the new way of providing funding support for Australians with disability, their families and carers.

MAINSTREAM SERVICES These are the government systems that provide services to the general Australian public (outside the NDIS) like Health, Mental Health, Education, Justice, Housing and Employment services.

CORE SUPPORTS

PARTICIPANT When a person is eligible for NDIS support, they are called a participant.

NDIS PLAN This can also be known as a Support Plan or just a Plan and is a written agreement which is developed with a participant. It states their goals and needs, and the support and funding that the NDIS will provide.

PROVIDER A provider is someone who has products or services (supports) to help participants achieve the Leap in! Plan Management goals in their plan.

helps you get ready for your NDIS meeting and is the perfect partner to manage your plan.

SUPPORTS

Supports are different to providers. They are a thing that can help a person undertake daily life activities and can enable them to reach their goals.

Core supports in the NDIS are things that help you in your day-to-day life. The Core supports budget is the most flexible part of your budget, with funding often able to be used across any of the four categories issued to you which are: Consumables, Assistance with Social and Community participation, Transport and Assistance with Daily Life.

CONSUMABLES Everyday items that you rely on because of your disability fall under the consumables category. These products may give you more confidence or help you to become more independent.

FORMAL SUPPORTS I’ve got my NDIS plan and I’m looking for a plan manager.

I’m getting ready for my first NDIS plan.

Leap in! gives you: Get started with: Formal supports areandpaid These • Fast turnaround – join today claim supports. • A free NDIS pre-planningmay consultation – all you tomorrow! need to know in one call have a• Real formal in NDIS place. time trackingagreement of your NDIS budgets or contract • Australia’s leading planning app • Easy claiming and payment of your invoices • Assistance to find providers that are right for you.

Improving someone’s ability to carry out an activity or task, eg – therapy.

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SIGNIFICANT, PERMANENT DISABILITY A disability that a person will have for the rest of their life and that affects their ability to take part in everyday activities.

REASONABLE AND NECESSARY In order to be considered reasonable and necessary, a support must, • be related to your disability • represent value for money • take into account any informal supports given to you by your family, friends, support crew (including support workers, support networks and the community) • be funded by the NDIS.

A Nominee is a person (often a parent, family member or friend) who an NDIS participant has nominated to assist with the unpaid management and organisation of supports.

• Info on all the options for managing your plan • Experienced and friendly crew ready to help.

It’s time to make Leap in! itishappen. a registered charity and a NDIS-registered plan Call 1300 05 78 78 or download the free app to today. answered, book your free NDIS pre-planning session or

A person who works to assist a participant understand their plan, find and engage with formal supports. This is a funded support available to participants who have the Support Coordinator category in their plan.

• be likely to be effective and beneficial

CAPACITY BUILDING

Unlock your NDIS. NOMINEE

SUPPORT COORDINATOR

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manager. Call them on 1300 05 78 78 to have your questions sign up to Leap in! plan management today. leapin.com.au

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SOCIAL SKILLS RESOURCES

Great social skills products & services!

HELP YOUR CHILDREN FIND THEIR OWN TRIBE!

There are loads of great products out there to encourage development of our children’s social skills – here are a few of our favourites; think music, dancing, games, yoga, books, apps and even gardening to name just a few ways to encourage these skills!

COMMUNITY GARDENING Many mainstream and developmental/ special schools include sensory gardens, along with the quintessential Aussie ‘vegie patch’ or herb garden if you have a smaller area to work with. Take turns by using a variety of gardening tasks to encourage kids to team up and work together. Whatever your dynamic, getting out there in nature is a wonderful way to develop and enhance social skills (and they won’t even know they are doing it as they’ll be having so much fun!) RRP Free!

EARLY START DENVER MODEL - PROMOTING LANGUAGE, LEARNING AND DEVELOPMENT The Early Start Denver Model (ESDM) is an evidence-based model of intervention for parents and professionals assisting children with ASD. The ESDM uses a set of teaching principles and a developmental curriculum designed to address the needs of preschoolers with ASD. The major focus includes skills that enable communication, social learning and engagement in naturalistic learning activities. While the intervention is intensive, it is delivered within play, daily routines and every day moments, across multiple settings, making it highly accessible. www.cdinstitute.com.au 38

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YOGAKIDS GAME – BY SKILLBUILDERS Yoga is for everyone! Yoga is a highly therapeutic, fun way for children to develop a whole range of skills – including calming techniques to help with their social development. We think you will love The Yoga Garden Game (New Edition). Since many yoga positions are named after animals and objects found in nature, kids can use their imaginations while learning different poses. RRP $40 www.skillbuilders.com.au/shop/yoga-forkids/the-yoga-garden-game

INSIDE OUT

– DVD AND BOOKS The Disney movie Inside Out is a story of a little girl and all the emotions interacting inside her head. Riley is the main character, and with each of her emotions —Joy, Sadness, Anger, Fear and Disgust — we watch as her emotions lead her through her life and influence her way of doing things. Both as a DVD and a set of books, this is a great tool to use with children to help understand and recognise the different emotions we all have inside of us. RRP $19.99 (Book) www.angusrobertson.com.au

GREEDY GORILLA - BOARD GAME We love this board game from My Diffability. Greedy Gorilla helps to practice winning, losing, turn-taking and waiting skills. Use the healthy food cards to create nutritious meals and post the junk food into the gorilla's mouth to make him burp! You are all sure to get a giggle out of this game! RRP $44.50 www.mydiffability.com.au/collections/socialskills/products/greedy-gorilla-game www.sourcekids.com.au

Dancing

For centuries, dancing has continued to play an important social element for many people across the globe. Used to express, share stories and break down barriers, it makes sense why it is wonderful for our children who live with disabilities. Just look around in your local community for dance classes and groups that cater for children with special needs – we are sure you’ll find one that your child will love! The Tippy Toe Co is a dance company in Brisbane that hold inclusive dance sessions for all abilities. Please see what they have to offer here: www.thetippytoeco.org/intro

TOUCH AUTISM – SOCIAL STORY AND CREATOR – APP This iPhone app by Touch Autism is where you can create individual and personalised social stories for your budding social butterfly! With a variety of features, including social stories already created for you to use, you can also create stories that are relevant to your situation and child. RRP Free on the iTunes store.

BILL NASON

MOOSHUNS

What are Mooshuns? Mooshuns are moody cushions! We love these emotional tools that help children with communication needs express how they are feeling. Finding a simple way for children to share their feelings or indicate their emotional state is such an important and positive step. We also love that these cushions speak a universal language, no matter what your background in our diverse Australian culture! RRP from $12.00 www.mooshuns.com.au/products.html

Bill Nason is a mental health professional, behaviour and autism specialist with over 35 years of experience working with individuals with autism spectrum disorders and developmental disabilities. He develops positive behaviour support plans which encourage strategies to help with minimising burnout associated with sensory, social and mental fatigue. With a wealth of knowledge to help parents with their children and guide them to a positive way of living for all. Amazon.com

MUSIC-MAKING AND RHYTHM GAMES

FOR YOUNG CHILDREN – ACTIVE 8 – DRUMMING Anything that creates sound and music is a sure-fire way to encourage positive social skills and we like the sound of that! Research shows that group musical activities are a great way to encourage kids to interact with one another and help grow their confidence in friendship making. Think local music therapy groups; singing/playing an instrument – including the very popular activity of drumming! Active8 is an organisation in Brisbane that offers drumming classes to help develop social skills. Check out their timetable here: www.activeeight.com.au

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How does Zinc Oxide work? Zinc Oxide works by creating a barrier over the affected area protecting the skin from irritants and moisture, promoting healing. Zinc Oxide is also known for its antiseptic properties. Abena Zinc Oxide Spray was developed as an alternative to creams, to minimise friction during application. Abena Zinc Oxide Spray is available in two concentration 4% and 10% and has been designed specially to protect and regenerate the skin. The spray application is designed to prevent contamination and minimizes friction on the skin. What is the difference between 4% & 10% Zinc Oxide Spray? • The Zinc Oxide content is higher. • 10% is recommended for adults or where the skin is severely irritated • 4% is recommended for children or mild symptoms. Email for a FREE 4% Sample: sales@vichealth.com.au

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i my name is Archer, I am seven years old and I have a rare genetic syndrome called Coffin Siris syndrome. Amongst many disorders and symptoms that form part of this syndrome, I have an intellectual disability, I’m non verbal and have global developmental delay. My parents are trying really hard to toilet train me but it doesn’t come easily. I can be prompted to go but it’s hit and miss so to be safe I am in disposable nappies full time. Archer’s mum tells us -

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The Abena Abri-Flex Junior is a brand new pull up pant designed for children and teenagers. These can be worn just like normal underwear, enhancing the wearer’s feeling of freedom and dignity. Email for a FREE Abri-Flex Junior Sample: sales@vichealth.com.au

I order boxes of disposable nappy pants monthly and I can assure you that the time frame between ordering and delivery is within a few days of each other. Even the delivery man is cautious with where he places the order, making sure it is out of the rain and in a safe place. I love that!! We have given the ‘free Bambo Nature wipes’ offer (using Source Kids mention) a go within a few orders too. It is a blessing to have such a service readily available, thank you VHP, you have made our lives just that little bit easier.

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LINDSAY FAMILY

MEET THE

OUR FAMILY IS CAMERON, VANESSA, OLIVE (9), ARCHER (7) & GUS (4) AND DAISY (KITTEN 4 MONTHS) AND WE LIVE AT ELANORA HEIGHTS ON SYDNEY’S NORTHERN BEACHES

intricacies of language, especially inferences very tricky. Being a nine year old girl – the school playground can be very overwhelming for her.

WHAT IS YOUR CHILDREN’S DIAGNOSIS?

They both have low tone, find emotional regulation near impossible and are extreme sensory seekers. Gus also has hypermobility. Fragile X syndrome is linked to autism, however both kids missed the memo for this one and have ADHD instead.

Both Olive and Gus have been diagnosed with Fragile X syndrome, something we’d never heard of before. In fact Cameron thought the paediatrician said Gus has ‘Fragile eggs’ – he was very confused. Cameron went in to it’ll be alright, we’ll make it work mode and I just cried and cried – I was grieving. I felt cheated, scared and worried for the future. Then there was all the guilt. The guilt that I had passed on my faulty X chromosome and the guilt that our son Archer would have two siblings with additional needs. It took time to come to terms with the diagnosis, but I now feel hopeful of the future and more confident that we will be able to navigate our way through the challenges. Olive has learning and social difficulties and can also find social situations challenging and difficult to navigate. She also has anxiety and finds the

Gus has an intellectual disability and has been delayed in achieving his developmental milestones such as walking and talking. Gus also has anxiety and struggles in social settings.

They both have an infectious smile, a great sense of humour and give the best cuddles….you just have to catch them first!

WHAT LED TO THEIR DIAGNOSIS? We always knew there wasn’t something quite right with Olive; she was a quirky kid, however, every professional we saw couldn’t pinpoint what the issue was. We tried various therapies and diets that had some initial impact but never fully resolved things. Her behaviour intensified when her brother Archer was born. She would constantly touch him, pick him up, cuddle or hit him. It was a very stressful time. We sought professional advice

however was told that her behaviour was just sibling jealousy. After Gus was born, he started to miss developmental milestones. He was a bottom shuffler and while we thought this was really cute, he was so flexible in his hips we thought he needed some strengthening exercises of some sort. Our diagnosis journey started with a very clued in paediatric physiotherapist. Gus was making progress and getting stronger after his paediatric physio sessions, however we decided to see a paediatrician. The paediatrician spent over two hours examining Gus and couldn’t put his finger on what was exactly wrong, and he suggested genetic testing. The results came back confirming Gus had Fragile X syndrome and when the paediatrician was explaining the symptoms it was like he was describing Olive, with blood tests later confirming that she also had Fragile X syndrome. Our world certainly looked different from that day.

HOW ARE YOUR CHILDREN DOING IN SCHOOL? Olive is in year 4 at the local public primary school. She loves going to school and has a great network of friends who are all very supportive of her quirks. She is so proud of how well she reads and her spelling is really coming along. Olive is easily distracted in the classroom and can find it challenging to maintain concentration. When things are tough for her, she is disruptive. Her teacher is amazingly supportive and very open to trying new methods of emotional regulation for Olive so she can be a better learner. She can also find the social interactions in the playground challenging. Olive attends additional smaller sized classes to assist with her reading and comprehension. She has modified mathematics work and a couple of hours a week allocated for one-on-one support in the classroom. She is working on functional maths: basic numbers, telling the time and understanding money – a concept that is very tricky for her but a very important life skill. Gus attends a local community preschool three days a week and they are really supportive. He has a dedicated member of the teaching staff allocated to support him; she is amazing. He is thriving in this environment and interacts well with the other kids. He is working on giving ‘gentle’ cuddles as he often loves his friends a little bit too much. We are very proud of his communication and language skills – he is now consistently putting two and three words together. Gus is currently interested in drawing and learning how to write his name, he continues to amaze us and his educators with how well he is going.

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AS A FAMILY IT’S ABOUT FINDING A BALANCE BETWEEN MEETING THE NEEDS OF THE KIDS AND JUST DOING EVERYDAY TYPICAL FAMILY THINGS. WHAT THERAPIES DO YOUR CHILDREN DO? Olive attends speech therapy weekly, OT fortnightly and sees a chiropractor every 4 weeks. Psychology sessions have been helpful too so we are in the process of getting back into that every 3 weeks. Gus attends weekly speech therapy, OT, music therapy, swimming lessons and sees a chiropractor every 4 weeks. It’s challenging finding time to juggle the kids therapy plus sport – training and games for Olive and Archer. Cameron is able to work from home one day a week so we align this day with Olive’s OT. Gus’s appointments are on the days he doesn’t attend preschool and as his full-time carer I am able to take him to these appointments. We try to schedule any appointments so that only the child attending the appointment is there and is not distracted by their sibling.

WHAT CURRENT GOALS DO YOU HAVE? To continue to support Olive through the remainder of primary school and find a suitable high school that will be able to cater to her challenges to allow her to thrive and gain the maximum out of the remainder of the schooling period of her life. The short-term goal for Gus is similar to Olive’s and find a suitable primary school that will allow him to continue to flourish, learn and enjoy the experience. As a family it’s about finding a balance between meeting the needs of the kids and just doing

everyday typical family things.

WHAT ADVICE WOULD YOU SHARE WITH SOMEONE STARTING OUT ON THE SPECIAL NEEDS JOURNEY? While being mindful that everyone’s story is different, as much as it is a cliché you have to be mentally strong and confident in yourselves as parents. If you are still grieving what was, it’s too hard to move forward. They say it takes a village to raise a child, at this time this saying could not be more pertinent. Be open to help and support from family/friends/ community. Most won’t understand what you’re experiencing but by accepting their offer of support it allows them to feel they are contributing. Don’t be afraid to change service providers if it’s not helping to achieve the desired outcome. We have also changed providers if it didn’t feel like the kids had a good connection and/or relationship. At the end of the day it’s about ensuring the kids get the maximum benefit out of these early intervention activities. I remember one of the first things our paediatrician said to us was “don’t look at Gus any differently. He is the same boy today that he was yesterday”. At the time this infuriated me and I couldn’t believe that he’d said that. Now I totally understand what he meant, and I agree with him. It just took some time to come to this realisation.

We’d love for people not to stare or be afraid of people with additional needs. We understand that it’s human nature to feel uncomfortable around the unknown, but a friendly smile or a simple hello goes a long way.

PRODUCTS WE LOVE: Sensory items such as Chewies, Noomi bean bags, bubbles. Our trampoline is the best form of exercise and regulation ever.

PEOPLE (OR BUSINESSES) WE LOVE: Our wonderful team of therapists. They put their heart, soul and hours of work and love in to understanding our kids and our family. Without their help, I’m not sure where we’d be. Our absolutely amazing family and friends. Their support, understanding, concern and unconditional love is mind blowing. We are the luckiest little family on the planet to have them.

OUR THERAPISTS: Eva Tatrai at KIDZ COMMUNICATE Kerry Gibbett, Occupational Therapist Anita Connell at Tuned In Music Therapy Lisa Hughes, Occupational Therapy Helping Children

WHAT ARE YOUR HOPES FOR THE FUTURE?

Amy Mulkearns, Speech Pathologist at Northern Beaches Speech, Language and Reading

Inclusion, inclusion, inclusion in all aspects of community.

Dr. Andrew Ullo (Chiropractor), Absolute Health Solutions ISSUE 21

SPRING 2019

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ISSUE 21

SPRING 2019

SOURCE KIDS

MENTAL HEALTH

How to achieve better health and wellbeing:

EMPOWERING MOTHERS OF CHILDREN WITH A DISABILITY BY ASSOCIATE PROFESSOR HELEN BOURKE-TAYLOR, MONASH UNIVERSITY, FRANKSTON, VICTORIA

As an occupational therapist working with babies, children and young people with disabilities for many years, I often asked myself…

How are mothers feeling? How do mothers manage everything asked of them? Do mothers think about sleep, healthy food or exercise? Do mothers find supportive people to laugh with or enjoy time out? Over the next two pages I’ll talk about some of my research into mothers of children with a disability – around 1000 amazing mothers have contributed to various research projects with many expressing a wish for better health. I’ll also share some of the wisdom from marvellous mothers that I have met who made changes to achieve a healthier lifestyle. Just so you know, all quotes are from real mothers and collected in ethically approved research projects. When mothers take care of themselves, the culture of self-care and health improves for everyone in the family. One mum, Gretal, explained that healthy changes are about:

“ …setting little achievable goals… take little steps, not the whole thing at once, break it down a little bit. If I look at my daughter’s education, that’s exactly what they did… they celebrate all the little things…the little things are successes as well.”

MOTHERS: MENTAL HEALTH, WELLBEING AND HEALTH

factors relate to a lack of time to attend to health,

Mothers of children with a disability are known to experience much higher rates of anxiety, depression and some chronic medical conditions compared to other mothers. You are not alone if you feel that your mental or physical health is not as good as it could be

REGARDLESS OF THE SOURCES OF STRESS, YOU MAY BE ASKING YOURSELF: HOW CAN I MAKE A CHANGE?

Research from at least 20 countries indicates that mothers of children with a disability experience stress at much higher levels over longer periods. The work of Elizabeth Blackburn, the first Australian woman to earn a Nobel prize, provides an example of the impact this can have. Professor Blackburn identified the parts of our cells responsible for aging and made the alarming discovery that mothers of children with a disability with high, unrelenting stress, actually had accelerated cellular aging. This means that they were aging faster than other similar aged women. However, very recent research indicates that reducing how stressed you feel and exercising regularly, can reverse cellular aging. Arming yourself with this knowledge means that you are in a better position to improve your own situation. Knowledge is power.

chronic sleep disruption, inability to participate in the paid workforce or a lack of supportive adults available to the mother.

Research has identified that the single most important factor to improved health and wellbeing is the frequency that mothers participate in activities for themselves. When monitored over eight months, mothers participating in health promoting activities 2-3 times per week had a significant reduction in signs of stress, anxiety and depression. Specifically, the activities involved: • self-care (planning what to eat, when to exercise, how healthy habits would fit in the week) • physical activities alone or with others (walking, running, gardening, dancing, etc) • spiritually fulfilling activities that may be religious or simply reflective time in nature • social activities with supportive others

WHAT MOTHERS SAY ABOUT STRESS In research, mothers have identified many issues that cause them high stress. Some of the issues relate to external family factors such as difficulty navigating the service system around their child/ children or a lack of support or professional services needed by the child or family. Other

• quiet activities, that may be alone or with others (reading, listening to music, baking, painting, etc) Often mothers underestimate the importance of spending time with supportive people. Supportive people do more than make us feel good, they support our mental health and wellbeing.

Every little thing that you do for yourself is a step in the right direction 46

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Participation in rejuvenating personal time is a positive way to replenish yourself Mary, a mother of a child with a disability stated:

" To me the most important light bulb moment was when I realised the importance of social support and friendships to my health. I don't think that I had really made that link before. I realised that I need to prioritise time with friends a little bit more" Empowerment around the disability or health condition affecting a child/children is also associated with better mental health and wellbeing. Typically, mothers have worked through rapid knowledge acquisition in relation to their child’s condition, understanding the roles and services offered by professionals and therapy or medical interventions that may assist their child. Many mothers have immersed themselves in learning ways to help their child, often becoming experts and having impressive knowledge and skills that they readily share with other parents. Empowerment is a cornerstone to managing daily family life and getting out there and participating in your local neighbourhood, school and community. Geraldine was in awe of the mothers she knew who also had a child with a disability:

" Women are such an important part of families in the community. I think we're unsung heroes..."

MOTHERS: FINDING BALANCE AND SEEKING HELP

Rejuvenating personal time is meaningful and promotes balance in daily life

All mothers seek to achieve a good balance between caring responsibilities, attention to health, fun, work and other life responsibilities. Mothers know when they are in balance. Balance can be achieved through prioritising your own needs. Wake up each day and plan— • What will I do for myself today? • What food will nourish me today?

Balance is the foundation to health and wellbeing

• Who will provide good support and who’s company will I enjoy and share friendship with today? • What exercise can I manage today? • When can I take a rest—however short, today?

At the end of the day, take some time to celebrate what you achieved for the day generally, and specifically in regard to your own self-care. Sometimes the suggestions above are not enough to reduce anxiety, stress or depressive symptoms. Counselling and professional support may help you to manage your mental health and wellbeing. Your general practitioner can provide you with access to Medicare funded mental health support. Another option is the Carer Gateway, which provides a way to find local counselling services that may be helpful. See https://www.carergateway. gov.au/. Sometimes mothers think that it is a weakness to need professional help or express that they feel sad or anxious. However, it is a strength to acknowledge how you feel and reach out to find support for yourself. We were never meant to travel our life journey alone. As Corrine explained “12 months ago I was pushing everyone away. I just thought, they don’t understand… But it’s up to me to change that. It’s not up to them, because only I can inform them.” Seeking help and support from those around you can bring stronger connections and help you achieve a better balance in life. Managing and staying strong means finding and using all of the supports that you have available to you.

Healthy Mother Healthy Families (HMHF) is a health and empowerment program specifically designed for mothers of a child with a disability who identify as experiencing high stress and the need to attend to their own health and wellbeing. The day workshop provides mothers with information, research findings and the shared wisdom of other mothers, to better support mothers to meet their responsibilities whilst also caring for themselves. For more info email Helen.Bourke-Taylor@monash.edu, Associate Professor at Monash University. Note: With thanks to Holly Johnson, occupational therapist, for creative graphics

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F L O G

SOURCE KIDS

GOLF

BY RACHEL WILLIAMS

GOLF MIGHT BE SEEN AS A GAME SYNONYMOUS WITH SPORTING SUPERSTARS AND THE RICH AND THE FAMOUS BUT ONE AUSTRALIAN ORGANIS ATION IS MAKING THE FAIRWAYS AND GREENS EASIER TO ACCESS THAN EVER BEFORE. Empower Golf Australia is enabling people with a disability to hit up courses across the country.

Empower Golf Australia was the avenue to do just that.

The not for profit was established as a disability recreation organisation by James Gribble - a former business executive who was left a quadriplegic in 2008.

EGA’s programs are delivered at established golf facilities and supported by golf Australia and the Australian PGA.

A freak fainting incident in Africa changed his life forever. After falling backwards from a chair, he was left with a broken neck and badly damaged spinal cord and spent four years completing intensive rehabilitation that allowed him to walk again for short distances with the assistance of crutches. Before his injury, James played golf around the world with a single digit handicap. Crucially, his rehab was so successful that he could again swing a golf club and after his long struggle he is one of the only quadriplegic golfers in the world. “From my own personal rehabilitation journey and focus on returning to my passions I felt compelled to help others in similar but less fortunate situations,” James said.

The organisation provides facility improvement advice, staff disability training, nationwide clinics and events, the funding and procurement of adaptive equipment, multidisciplinary tournaments, private lessons and support services. James says EGA now assists between 4000 and 5000 people annually and he has high hopes to double those numbers. “We would like to grow from 15 inclusive facilities to over 40 nationally within the next 2 years and empower thousands more to change their lives,” he says, adding that the sport changes the lives of the family, friends and carers of those with a disability. Once people overcome the greatest hurdle of initially trying out the sport, he says participants get more than just physical benefits. “The psychological and social sides are most amazing,” James says. “Some enjoy the fact that you can play with anyone, whether it's your children, work colleagues, strangers or friends. Some love the fact that it can be an individual or team sport. Others like the fact that they don't have to only play with other people with disabilities.

says there is a list of 130 PGA All Abilities Coaches around the country that he recommends - with 7830 people with disability participating in Golf Australia Programs last year. The youngest participant was aged just five. “They work together in eliminating any physical barriers or educate others on how to best accommodate the participant’s needs,” Christian says. “We have also created an offering for kids who may not feel supported in mainstream programs called MyGolf All Abilities.” MyGolf has a games-based philosophy, Christian explains. “Every game in the MyGolf Curriculum can be modified to suit differing levels of ability. Each activity has 5 different modifications available to the deliverer whilst maintaining the integrity of the activity. Small modifications may include substituting a golf ball for tennis balls, differing clubs (SNAG Clubs have a larger head size than traditional golf equipment), larger or smaller target sizes, moving targets closer or further away etc.

And, all love being outside in the sunshine and fresh air. “Golf is really the only sport with a unique handicap system which allows all individuals to participate and compete alongside each other no matter their gender, age or ability,” James says. “Golf clubs provide the ideal community to foster friendships, reduce social isolation and build networks for those with disabilities “It is a lifelong, low impact sport with significant infrastructure around Australia.” That’s a view shared by Golf Australia. GA Inclusion Senior Manager Christian Hamilton 48

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“ IT’S AN ALL-TERRAIN SPECIALISED POWER WHEELCHAIR WHICH MANOEUVRES INDIVIDUALS INTO THE UPRIGHT POSITION, SO EVEN THE MOST SEVERELY PHYSICALLY DISABLED INDIVIDUALS CAN ACCESS THE GAME..."

“PGA All Abilities Coaches complete an intensive training program that teaches the value of universal design principles, modifying activity whilst having a basic understanding of physical, sensory and cognitive impairment.

concept of EGA, individuals can attend one of over 300 clinics across the country annually.

has been playing since 2015 thanks to the use of the ParaGolfer.

The first clinic attendance is always free and many locations allow participation in clinics for free regularly.

“Technology has also advanced with a number of gripping solutions available and mobility devices such as the ParaGolfer for people who may use a wheelchair.”

The 49-year-old says it’s one of the only sports available to her thanks to the specialised equipment.

Outside of clinics, people can book lessons with an accredited disabled golf coach or support staff to assist them practising or playing the game.

Cathy says she loves the challenge, meeting new friends and embracing the outdoors and her longterm goal is to play 18 holes one day.

It’s the ParaGolfer that allowed James back on the course. “ It’s an all-terrain specialised power wheelchair which manoeuvres individuals into the upright position, so even the most severely physically disabled individuals can access the game,” James explains.

“If specialised equipment is needed we can arrange purchase, trial or hire accordingly,” James explains. “We also run tournaments for those who wish to compete for fun or more seriously.” James says there are no real limitations for involvement.

“If a quadriplegic can play golf almost anyone can have a try.”

“We like to think that almost anyone can enjoy golf whether they can physically hold the club themselves or need assistance, can see the ball or need guidance or just want the social interaction.”

If you are interested in getting involved and like the

Sydneysider Cathy White has cerebral palsy and

“Simply getting out of my comfort zone to try something new was completely life changing for me,” she says. “It gave me the confidence to progress into other sports and activities.” For more details about how you could soon be shouting ‘Fore!’ on the fairway, you can visit: www.mygolf.org.au/mygolf-all-abilities www.golf.org.au/pga-inclusive-coaching www.empowergolf.com.au

The NDIS recognises golfing is for everyone! • Adaptive, all abilities national ‘Come and Try’ Golf Clinics • Build friendships and enjoy the inclusive nature it offers • Improve overall health and wellbeing, at a relaxed and leisurely pace

COME GIVE IT A TRY!

Empower Golf is the only national NDIS registered golf provider, so talk to the team on how your goals can potentially incorporate golf today.

" Empowergolf ! EmpowerGolfAustralia !$

EMPOWER GOLF AUSTRALIA - For golfers of all abilities -

Ph. +61 466 825 044 www.empowergolf.com.au

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Freedom is choosing where you want to explore.

Wizzybug! Exciting and fun powered mobility option for young children Wizzybug is a powered vehicle for young children to experience early years in an adapted mobility device. It has a range of controls and seating adjustments and can be used with close adult supervision indoors and outdoors in accessible areas such as level gardens, playgrounds and parks enabling children to have a fun experience with their first wheels. Independent mobility has been proven to assist and encourage important developmental skills, along with giving your child the freedom to safely explore their environment.

- Suitable for children aged between 2-5 years (maximum weight 20kg) - A range of control options including joy stick, specialist switches and remote operation - Easily transportable â&#x20AC;&#x201C; dismantles quickly - Has a standby charge of 2 weeks and will usually run for a few days based on moderate use - 8km range on full charge - Maximum speed of 2.9km/hr (speed can be limited)

Wizzybugs can be hired or purchased from CP Tech.

Call us on 1300 106 106 to find out more.

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Bikes

ADAPTIVE TRICYCLE

ADVENTURE Recumbent Company

Astris PME

PRODUCT REVIEW

BIKES

What's better than a bike ride in Springtime? We have put together a comprehensive list of bikes, trikes, tricycles and accessories available in Australia, suitable for toddlers right into adulthood. Be sure to see the links below to each company for further information. ATTITUDE HAND BIKE

BMX COOL TRIKE AND MTB COOL TRIKES

Sunrise Medical

Achievable Concepts Age range: 4-18yrs Weight range: Up to 91kg Height range: N/A Multiple sizes: Yes Type: Tricycle

SUITABLE FOR CHILDREN YOUTH

Age range: 10-99yrs Weight range: Up to 125kg Height range: 135-280cm Multiple sizes: Yes Type: Freestand. Pwd Tricycle

SUITABLE FOR CHILDREN YOUTH ADULT

Age range: 12-99yrs Weight range: Up to 100kg Height range: N/A Multiple sizes: No Type: Powered Manual Hybrid

SUITABLE FOR YOUTH ADULT

Age range: Weight range: Height range: Multiple sizes: Type:

2-99yrs Up to 90kg 75-177cm Yes Tricycle trike

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

Key features: • Quickly adjusted, no tools needed • Grows with the child •E asily engaged parking brake to keep the bike firmly in place

Key features: • Extremely safe, stabile and agile • Very easy to enter and exit as well as to operate • Compact flat twist fold

Key features: • Easily mounted onto manual wheelchair •A ttitude promotes inclusion on family outings/activities • Adjustable and adaptable

Key features: • From 12” to 26” Trikes • They blend in and look cool • Light weight • Fixed wheel, free wheel, geared options

These tricycles are not only fun, they provide lower extremity strengthening, balancing skills and more.

The Adventure is a very stable, comfortable recumbent trike with easy access, upright support and ease of control.

"The Attitude range comes in 3 types; Manual, Power and Hybrid.

Available in a wide variety of sizes and colours in steel and light weight aluminium

BODY CYCLE TRIKE

CROSS RUNNER RACE RUNNING BIKE

DC-TRI ELECTRIC TRIKE

DCP12

Freedom Wheels

Dejay Medical, Special Needs Solutions

Movement Tech

Dejay Medical Age range: Weight range: Height range: Multiple sizes: Type:

14-99yrs N/A 160cm+ No Trike

SUITABLE FOR YOUTH ADULT

Key features: • Additional postural support • Rear steering for additional support from another individual • Cushioned back support Additional postural support, stability and builds confidence for teens and adults who are looking for extra support.

DCP16

Age range: From 7yrs Weight range: Up to 90kg Height range: Up to 193cm Multiple sizes: Yes Type: Trike

SUITABLE FOR YOUTH ADULT

Key features: • Folding Frame, quick release wheels • Option with off-road tyres • Easy to manoeuvre Large wheels, stable frame and optional wide tyres enable you to get around outdoor places where a rollator, walkers and normal wheelchairs don’t do the job.

DUET WHEELCHAIR BICYCLE TANDEM

Dejay Medical, Special Needs Solutions

Age range: 12-99yrs Weight range: Up to 120kg Height range: N/A Multiple sizes: No Type: Freestand. Pwd Tricycle

SUITABLE FOR YOUTH ADULT

Age range: From 4yrs Weight range: Up to 57kg Height range: 35.5-50.8cm Multiple sizes: Yes Type: Trike

SUITABLE FOR TODDLER CHILDREN YOUTH

Key features: •D esigned with safety and ease of use as the core design pillars • Completely self-balancing • Intuitive easy to use controls

Key features: • Quick release mechanisms on all adjustable parts • Direct drive gearing • 12” Never-Go-Flat tyres

The DC-TRI is an electric bike that serves the purpose of a mobility device without looking like one.

Excellent stability and fits through standard door openings, making it a popular choice in schools and therapy settings.

FREEDOM WHEELS BIKE

GEKKO FXS

Recumbent Company

Freedom Wheels

CP Tech Age range: From 7yrs Weight range: Up to 68kg Height range: 48.2-66cm Multiple sizes: No Type: Trike

SUITABLE FOR TODDLER CHILDREN YOUTH

Age range: Weight range: Up to 124kg Height range: N/A Multiple sizes: No Type: Tricycle

SUITABLE FOR CHILDREN YOUTH ADULT

Key features: • Quick release mechanisms • Direct drive gearing • 16” Never-Go-Flat tyres

Key features: • Quick release locking mechanism • Shimano Nexus 8 Speed Hub • Folding Seat with 3 Position Seat Angle

Small enough for an average 7-year-old, but adaptable to fit most kids in their early teens.

The Duet provides easy and comfortable pedalling to ensure maximum manoeuvrability with minimum effort while facing forward

LINKS TO PRODUCTS FEATURED: www.cptech.com.au www.achievableconcepts.com.au

www.astris-pme.com.au www.cargocycles.com.au www.dejay.com.au www.kotzurcycledesign.com.au www.mobilityplus.com.au

Age range: Weight range: Height range: Multiple sizes: Type:

4-16yrs Up to 75kg 90-160cm Yes Quadricycle

SUITABLE FOR CHILDREN YOUTH

Age range: 6-99yrs Weight range: Up to 100kg Height range: 120-180cm Multiple sizes: Yes Type: Freestand. Pwd Tricycle

SUITABLE FOR CHILDREN YOUTH ADULT

Key features: •S upports can be easily removed and transported • Outriggers to provide stability • Additional Postural supports available

Key features: • Extremely stable, non-tipping •T he trike’s frame can be expanded & seat padding changed • Compact folding size for easy transport

16", 20" and 24" bikes include a range of attachments designed to provide additional support for young riders.

The Gekko fxs is an ideal foldable cycle that is extremely stable and can grow with a rider from child to adult.

www.movementtech.com.au www.recumbent.co www.specialneedssolutions.com.au www.stridersports.com.au www.sunrisemedical.com.au

www.freedomwheels.org.au www.tempotricycle.com www.therapytrike.com www.upsidebikes.com.au www.weehoo.com.au

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GOMIER TRIKE

IMP

Freedom Wheels

Age range: Weight range: Height range: Multiple sizes: Type:

14-99yrs Up to 120kg 160cm+ No Trike

SUITABLE FOR YOUTH ADULT

Key features: • Lower step through • An electric assist can be added for support on hills and longer journeys • Special bracket to assist with pedalling and six gears The Gomier Trike is the perfect trike for extra stability and carrying extra items like bags, shopping or a walking frame.

PETRA RACE RUNNING BIKE

Age range: From 1.5yrs Weight range: Up to 90kg Height range: Up to 193cm Multiple sizes: Yes Type: Trike

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

Key features: • Reliable handling • Easy transfer with droplink feature & wide- open rear frame • Easy to manoeuvre RaceRunning is a world para-athletic event & international disability sport for age groups from 3-73.

RECUMBENT TRIKE Freedom Wheels

14-99yrs N/A 160cm+ No Trike

SUITABLE FOR YOUTH ADULT

Key features: • Virtual suspension for comfort • Unique design frame • Power assist options The Greenspeed Recumbent Trike is the perfect trike if you are after performance efficiency, stability and speed.

STANDARD TRICYCLE

Age range: Weight range: Height range: Multiple sizes: Type:

Age range: From 2.5yrs Weight range: Up to 32kg Height range: 85-105cm Multiple sizes: No Type: Tricycle

SUITABLE FOR TODDLER CHILDREN

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

Age range: 3-99yrs Weight range: Up to 120kg Height range: 100-180cm Multiple sizes: N/A Type: Freestanding Tricycle

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

Key features: • Low access point and lightweight frame • Multi-directional adjustable saddle • Individual drive configuration

Small but perfectly formed with a low gear ratio for easier pedalling. IMP can be fitted with a selection of positioning accessories for comfort and support.

A robust, stable, 2-wheeled therapy bike with a huge range of supportive options and adjustable dynamic stabiliser wheels.

PINO

RABBIT TRICYCLE

Age range: 5-99yrs Weight range: Up to 225kg Height range: From 100cm Multiple sizes: Yes Type: Pwd Tandem Bike

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

Key features: • Provides riders with manoeuvrability, comfort and panoramic views • Easy to transport • Untippable kickstand for stable mounting and dismounting The Pino is perfect for riders who need an adult to accompany them.

Age range: Weight range: Height range: Multiple sizes: Type:

Age range: 3-99yrs Weight range: Up to 120kg Height range: 100-180cm Multiple sizes: Yes Type: Freestand. Pwd Tricycle

Key features: •S uper low access point and lightweight, robust aluminium frame • Multi-directional adjustable saddle • Individual drive configuration A stable, robust tricycle with a low access point and huge range of supportive options suitable for young children up to adults.

Tempo Tricycle Distribution Pty Ltd 2.5-99yrs N/A N/A Yes Tricycle

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

Key features: • Front wheel drive cycle • Very adjustable for different ages, seat slides up and down and back & forwards Originally made for blind and hearing impaired children, this is a very versatile tricycle.

Age range: 2.5-99yrs Weight range: N/A Height range: N/A Multiple sizes: Yes Type: Tricycle

Made for someone with little or no use of their legs, Comes apart to transport, easy to transfer from wheelchair.

ROAD RACER

SPORTS CRUISER

CP Tech

Tempo Tricycle Distribution Pty Ltd

SUITABLE FOR CHILDREN YOUTH

Key features: • Loop handlebar with height and angle adjustment • Adjustable backrest and seat • Foot cups Rehatri trike covers a range of sizes and user requirements via a mulitude of adjustment options

Age range: Weight range: Height range: Multiple sizes: Type:

8-99yrs N/A N/A Yes Tricycle

SUITABLE FOR YOUTH ADULT

Key features: • Frame to fit your size • Braking on all three wheels • Meets competition requirements Originally made for Vietnam veterans with injuries and needing a bike with no balance needs. Close to the performance of a racing bicycle.

TANDEM TRICYCLE

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

Age range: 5-99yrs Weight range: N/A Height range: N/A Multiple sizes: Yes Type: Tricycle

Age range: Weight range: Height range: Multiple sizes: Type:

3-99yrs N/A N/A Yes Tricycle

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

Key features: • Ease of using a hoist with this model • Fully supported seat • Seat is wheelchair height for ease of transfer A recumbent originally made for severely disabled persons, hoisted onto the trike.

TERRIER

Dejay Medical, Special Needs Solutions

Tempo Tricycle Distribution Pty Ltd 18mths-88yrs 10-110kg 70-155cm Yes Freestand.

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

Key features: • Low geared for ease • Fully adjustable seat to pedals, pedal height • Comfortable padded strung seat

REHATRI TRIKE

Age range: 4-18yrs Weight range: Up to 113kg Height range: 85-183cm Multiple sizes: Yes Type: Tricycle

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

RAPID HAND PEDALLED

Tempo Tricycle Distribution Pty Ltd

Strider Sports Australia 2.5-99yrs N/A N/A Yes Tricycle

Mobility Plus

Key features: • 12.5” wheels & small diameter handlebars for smaller fingers & hands • Fixed low gear for easy pedalling

STRIDER BALANCE BIKE

Tempo Tricycle Distribution Pty Ltd

MOMO TRICYCLE

Mobility Plus

Recumbent Company

Dejay Medical

Age range: Weight range: Height range: Multiple sizes: Type:

MOMO THERAPY BIKE

Dejay Medical, Special Needs Solutions

SUITABLE FOR CHILDREN YOUTH ADULT

Age range: From 4.5yrs Weight range: Up to 45kg Height range: 100-125cm Multiple sizes: No Type: Tricycle

SUITABLE FOR TODDLER CHILDREN YOUTH

Key features: • Made for disabled person’s low gearing • Lower, shorter and wider stability • Standard with fixed wheel

Key features: • Lightweight balance bike in sizes 12”, 14” children and larger 16” and 20” for teens and adults

Key features: • Needs no balance • Can carry a small child • Optional foot supports and backrest

Key features: • Folding frame • 16” wheels & caliper brake • Wide range of colours & accessories

This purposely made, technically correct tricycle is easy and fun to ride and stable.

Learn to roll, glide and turn on this bike with confidence.

Originally made for a blind gentleman whose wife didn’t have good balance, she needed a tandem tricycle, so they could go riding together.

Constructed from a strong yet lightweight frame and is fitted with an easy to pedal fixed gear. Adjusts forwards and backwards as well as vertically.

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THE 27" VOYAGER

THERAPY TRIKE

TMX

Therapytrike

Freedom Wheels

Age range: 14-99yrs Weight range: N/A Height range: 160cm+ Multiple sizes: N/A Type: Bike with Outriggers

SUITABLE FOR YOUTH ADULT

Age range: Weight range: Height range: Multiple sizes: Type:

10-99yrs 25-125kg 100-179cm Yes Tricycle

SUITABLE FOR CHILDREN YOUTH ADULT

Key features: • Low step through frame, allowing easy transfer on and off bike • Free Wheel set up • Outriggers to provide stability

Key features: • Independent pedal control • Adjustable seat side tilt • User or carer controlled, suitable for ambulatory & non-ambulatory users

Voyager is the largest Freedom Wheels bike, which provides low step-through frame and comes as a free wheel set up.

NDIS approved Australian made trike for users to stimulate muscle and cardio exercise even for those who are unable to support their own weight.

TRETS

TRIGO

Recumbent Company

TRACKER

Dejay Medical, Special Needs Solutions

Recumbent Company

Dejay Medical, Special Needs Solutions

Age range: From 8yrs Weight range: Up to 70kg Height range: 120-145cm Multiple sizes: No Type: Tricycle

SUITABLE FOR CHILDREN YOUTH ADULT

SUITABLE FOR TODDLER CHILDREN

Key features: • Extremely stable, non-tipping • Can be used in a variety of ways – as buggy, jogger, trailer and trike • Foldable for easy storage and transport Extremely stable, safe and versatile trike which meets the needs of a growing rider from the age of 2.5 to 12 yrs.

U-SCOOT

SUITABLE FOR YOUTH ADULT

Key features: • Folding frame to allow easy transport • Available with 20” or 24” wheels • Wide range of colours & accessories

An easy to pedal cycle for larger children. The low gear ratio makes it easy to get going, it also limits the top speed.

Has a caliper brake with a parking feature, alloy handlebar stem, alloy hubs and an alloy crank set for smooth and easy pedalling.

TWOGO TANDEM TRIKE

TWOSOME EXPRESS Tempo Tricycle Distribution Pty Ltd

Age range: Weight range: Height range: Multiple sizes: Type:

2-99yrs N/A N/A Yes Pwd tricycle

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

Age range: Weight range: Height range: Multiple sizes: Type:

8-99yrs N/A N/A Yes Tricycle

SUITABLE FOR CHILDREN YOUTH ADULT

Key features: • Extremely safe, stabile and agile recumbent trike • Very easy to assess and to operate

Key features: • Configured for all terrain • Wide range gearing • Very strong disc brakes all round

Key features: • Retractable stand for getting rider on • Three wheels for superior handling • Ease of seeing your rider

A fun, stable, safe and agile recumbent trike which can very quickly and easily be adjusted to fit riders of different heights.

The TwoGo III is a tandem with an upright rear rider for good shared forward vision, an easy conversational distance.

A side-by-side tandem, fun for all! A close bonding experience for all disabilities.

UPSIDEBIKE

VAN RAAM OPAIR 3

VELO PLUS WHEELCHAIR BIKE

Upside Bikes

Tempo Tricycle Distribution Pty Ltd Age range: Weight range: Height range: Multiple sizes: Type:

Age range: 10-99yrs Weight range: Up to 140kg Height range: 139-200cm Multiple sizes: Yes Type: Freestand. Pwd Tricycle

SUITABLE FOR CHILDREN YOUTH ADULT

Key features: • Folding frame to allow easy transport • 20” wheels & caliper brake • Wide range of colours & accessories

Kotzur Cycle Design Age range: 2.5-12yrs Weight range: Up to 65kg Height range: 99-150cm Multiple sizes: Yes Type: Freestand. Trike

Age range: From 13yrs Weight range: Up to 90kg Height range: 137-173cm Multiple sizes: Yes Type: Tricycle

Cargocycles

CP Tech 2.5-99yrs N/A N/A Yes Tricycle

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

Key features: • No balance needed • Good leg extension • Get to use both feet inside the treads Three wheel scooter for maximum fun and stability. Excellent for able bodied and high needs.

WEEHOO TURBO TRAILER Weehoo Australia

Age range: 2-16yrs Weight range: 10-100kg Height range: 30-180cm Multiple sizes: Yes Type: Tricycle

SUITABLE FOR TODDLER CHILDREN YOUTH

Age range: Weight range: Height range: Multiple sizes: Type:

2-70yrs Up to 140kg 130-200cm N/A Pwd Tricycle

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

Age range: Weight range: Up to 140kg Height range: N/A Multiple sizes: No Type: Tricycle

SUITABLE FOR CHILDREN YOUTH ADULT

Key features: • Adjustable - suits almost any child and any ability level • Safe - built to the highest quality standards and engineer certified

Key features: • Separate wheelchair option • Highly customisable • Comfortable both on road and light off road use

Key features: • User can sit in their wheelchair • Steered front wheels •E asy to ride a wheelchair on it due to the tilted ramp

The worlds first affordable special needs bike engineered to be safe, durable and to look cool!

The Opair is a wheelchair bike you can use to transport a wheelchair user or those with reduced mobility

Designed for transporting people who can remain seated in their own wheelchair by cycle

WIKE BIKE SPECIAL NEEDS TRAILER

X-ROVER

CAR RACK

Special Needs Solutions

Tempo Tricycles Distribution Pty Ltd

CP Tech Age range: Weight range: Height range: Multiple sizes: Type:

2-9yrs Up to 36kg N/A No Bike Trailer

SUITABLE FOR TODDLER CHILDREN

Age range: Weight range: Height range: Multiple sizes: Type:

N/A Up to 68kg 101-177cm Yes Bike trailer

SUITABLE FOR CHILDREN YOUTH ADULT

Key features: • Patented hitch ensures perfect fit • Kids can join the fun and pedal, or just sit back and relax

Key features: • Instant Folding • Quick Hitch • Safety Harnesses (5-Point Padded Bibs)

The Turbo is the safest and securest way to transport a child aged 2 - 9 years. The recumbent trailer means there are no balance issues and your child loves the riding experience.

The perfect solution for larger children, older adults, or individuals with special needs who want to join in on the family cycling fun

Age range: Weight range: Height range: Multiple sizes: Type:

3-90yrs 5-120kg 45-185cm N/A Bike Trailer

SUITABLE FOR CHILDREN YOUTH ADULT

Key features: • Easy to attach to standard bike • All Terrain 3 wheel stroller/bike trailer •5 point safety belt, lateral positioning supports and headrest all included Fantastic option for anyone who likes to get use it as an all-terrain three-wheel stroller, or hook it up to a bike and go .

Age range: 2.5-99yrs Weight range: Tricycle and 2 bikes Height range: N/A Multiple sizes: Yes

SUITABLE FOR TODDLER CHILDREN YOUTH ADULT

Key features: • Carries tricycles upright with 2 bicycles •C arries others cycles horizontal if necessary Makes it very easy to get the tricycle from your home to the cycle tracks near the seaside, the local park etc. Made in line with transport regulations, for things carried on the rear of cars.

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All your recreation needs in one place! Theraplay trikes with a folding frame for easy transport and storage.

Freedom trikes for people with high support needs.

Connie Hansen Race Running bikes for participation, recreation and competition.

Independence Mobility Fun

THERAPY TIPS

LET’S GO...

BIKE RIDING

RIDE A BIKE! Learning to ride a bike is a special moment in a child’s life and family bike rides are memories that many of us treasure into adulthood. We talk to two physiotherapists who give us their tips for getting the wheels turning for your child.

BY TRISH HILL Cycling is a wonderful activity for children of all ages to enjoy. With the right supports, any child can enjoy cycling if they’re keen!

motivating them when they come across challenges. What would cycling mean for your child?

The most obvious reason to get your child involved in cycling is that it’s a fun way to be physically active. In general, children across Australia don’t meet the World Health Organisation guidelines for physical activity of at least 60 minutes a day and, unfortunately, kids with disabilities are even less likely to get their full daily dose of activity.

Gathering this information will help the therapist to suggest some cycling options which will provide the support your child needs so you can try some cycling options together.

The great news is that getting out on a bike is a wonderful way to be active, which improves mental and emotional health. When a child is more active, they sleep better, are better able to maintain a healthy weight and develop healthy bones, joints and muscles.

CAN ANY CHILD CYCLE? The quick answer to this is yes! Just about every child who is preschool age (and some kids who are younger) can be supported to start cycling. It's just about figuring out what each child is able to do, and where they need extra support. You don't have to be able to walk, stand, sit or even hold your head up on your own to be able to cycle, as long as the supports are right. In the past, it was only kids who could "nearly ride" a typical two-wheel bike who were considered as having the potential to ride, but now kids of all abilities can be supported to start their cycling journey.

WHERE DO I START TO GET MY CHILD CYCLING? Begin by considering what your child's abilities are. What can your child do in terms of their mobility, balance, flexibility and body control? If your child has challenges in any of these areas, a therapist like a physiotherapist may be able to help to both assess your child’s current capabilities, and give you strategies to help build on these or support them while cycling. Next, think about your child’s ability to concentrate, follow instructions and to persevere with new skills. Understanding where they are at helps you structure your cycling sessions in a way that presents them with the “just right challenge”. Pitching the session right gives children just enough challenge to push themselves without getting too frustrated or losing motivation. Consider your child’s motivation for wanting to cycle, so you can assist in

WILL NDIS FUND MY CHILD'S CYCLE? If your child is able to manage riding a typical bike, (with or without training wheels) NDIS is unlikely to fund them a cycle. If your child needs more supervision or assistance to ride a typical bike than other children their age because of their disability, NDIS may fund someone to help your child ride. This person might be a physiotherapist who can teach riding skills, or support worker who can help them be safer when they’re cycling or practice their skills. If additional postural supports are required in the cycle for your child to ride, NDIS may cover some, or all of the costs associated with the cycle. On some occasions, families may be asked to contribute (equivalent to the regular cost of a bike) towards an appropriate cycle. When talking to the NDIA about cycling be sure to frame your goal from the perspective of participation. Think about your child's cycling goal. What would cycling allow your child to participate in? For example, will you go on rides with the family on weekends? Will cycling provide increased social opportunities by riding with friends? Or will it allow your child to have increased independence by riding to school? Remember that all children need support and supervision to learn to cycle, and it can be a scary time for kids and parents alike. Riding safely is always the goal, but so is having fun! Weigh up any potential risks with rewards. If you’ve had a go, and your child isn’t keen or they’re not having fun, perhaps the timing isn’t right for them. Don’t worry, there are plenty of other active options to try that they may also enjoy. Supporting your child to cycle can help them to have fun being active - what an amazing life-long gift to give your child! Trish Hill is a physiotherapist with Everyday Independence. She has many years experience supporting people living with disabilities to live to their potential and enjoy an everyday life. www.everydayind.com.au ISSUE 21

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BY SARAH WILDING

S E S I C R E X E T E G P L E H TO D L I H C R U YO

G N I D I R

Bike riding is a great developmental skill; research has linked 30 minutes of moderate cycling to improvements in memory, reasoning and planning. It has also linked cycling to improvements in how the child perceives the world around them as well as co-ordination, strength and balance. There are many different exercises that you can do with your child to help them work towards riding a bike. Bike riding can be a scary and challenging activity for many children, and we want to ensure we consider their developmental level, physical needs and how they process the environment around them when prescribing exercises. Therefore, it is recommended that you consult with your physiotherapist before you start exercises as they will be able to support you to set small achievable steps along the road to success. Always make sure your child has the right protective equipment and that you stay close by until they are competent. Consider medical implications including the impact of your child’s medication as well as any fears your child may have before riding the bike.

This may include activities like watching other people ride, placing guides on the bike for where the child should place their hands and feet, safely taking your child along on the back of your bike for them to get used to the movement or breaking up the task into shorter auditory cues. Once they have the planning for the task set, then focus on the co-ordinated movement of cycling the feet one at a time. Co-ordination can be developed by working on activities that use alternate arm to alternate leg movements like scissor jumps or crab walking.

3. CORE STABILITY AND BALANCE The next aspect is their balance or core stability. Exercises to help develop balance before trialling on the bike include: a. Sitting on a cushion with the legs off the floor throwing and catching a ball b. Swiss ball exercises in sitting c. Wobble board exercises in standing.

Bike riding can be broken down into the following components:

Using a scooter or scooting on the bike (with the seat lowered so your child can push from the ground to move the bike) are also great exercises to do. Once your child is ready to trial on the bike stand behind them as they ride ready to support their hips as needed to help them steady themselves.

1. MUSCLE STRENGTH AND ENDURANCE

4. ADAPTIVE BIKES

Bike riding involves a power phase and a recovery phase. The muscles involved in power are the muscles that straighten your knee and hip whereas the muscles involved in the recovery phase are the muscles that bend the knee and hip as well as lift the toes up.

This is important to consider particularly if your child requires assistance with their movements/mobility. An adaptive bike, including one with three wheels, will still give your child the co-ordination, endurance and emotional benefits as other types of bicycle.

There are two components of muscle strength and these include power and endurance. To focus on the power muscles jumping games, climbing activities or going up the stairs can be helpful.

Overall, these are just some of the examples of the exercises and aids that can be used to help your child learn to ride a bike. Your physiotherapist will be able to determine the best exercises for your child and how they might be integrated into your child’s plan. Remember, this is an exciting time in your child’s life so enjoy the ride!

To build endurance ideas include using a stationary bike, tricycle or a scooter and building up the time gradually. Training wheels can also help to develop endurance when riding a bike. However, it is best not to rely on training wheels long term as they can be detrimental in learning to balance.

2. MOTOR PLANNING AND CO-ORDINATION Motor planning is the ability for your child to take in the environment around them and process this feedback into learning a new movement. When teaching the movement of cycling it may help to provide different types of sensory feedback to help them learn the task. 56

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Sarah Wilding (BPhty, APAM) is a senior physiotherapist for Better Rehabilitation, a leading NDIS registered allied health provider that provides mobile in the home therapy and has offices across New South Wales, Queensland and Victoria. Sarah has a keen interest in children’s or paediatric therapy and has worked with children of all ages both in the hospital and the community. For more info visit betterrehabilitation.com.au www.sourcekids.com.au

SAVE THE DATES

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MAY 2020

13-14

Claremont Showground, WA

MAY 2020 Melbourne Show Grounds

For more information contact Allison Miller on (02) 4646 1453 or amiller@intermedia.com.au www.atsaindependentlivingexpo.com.au Organised by

Media Partner

ISSUE 21

SPRING 2019

SOURCE KIDS

BY RACHEL WILLIAMS

RARE DISEASE

RARE DISEASE:

FACIAL DIFFERENCE It was poignantly highlighted in recent Hollywood film, Wonder, featuring superstar Oscar-winning actor Julia Roberts. But for people with craniofacial differences, proving that beauty is more than skin deep is a constant battle that continues well after the hype of a movie dissipates. Around one in every 500 babies born will have some form of craniofacial anomaly, which can result from abnormal growth patterns of the face or skull, involving soft tissue and bones.

FIVE YEAR OLD LAUNCESTON GIRL ISLA WELLS HAS APERT SYNDROME. The syndrome is characterised by the premature fusion of certain skull bones, preventing it from growing properly and therefore affecting the shape of the head and face. A varied number of fingers and toes are also fused together. Isla’s mum Kylie says acceptance from mainstream

society is a challenge she fights daily. And, having a child with such a confronting profile was not something she was prepared for after a “normal” early pregnancy. Kylie’s 20 week scan had shown an issue with brain measurements but she had been reassured that there was nothing to be concerned about. “Other scans showed that everything was normal and I had a healthy baby, even the scan the day before she was born said there were no issues,” Kylie recalls. “My waters broke during the night, five weeks before her due date and I had a C-section because I had a growth on my ovary that needed to be removed and because I had gestational diabetes it would be safer for both me and baby. “Well what a shock it was for myself and my doctor when Isla was born - it happened so quickly I don’t remember much; only the look on my doctor’s face as she lifted Isla up and said ‘here is your baby’ and then Isla was taken away. “The doctor kept saying ‘sorry’ to me and that she wasn’t sure what was wrong with Isla and all that I could think about was that her hands were fused together.” Blood tests later confirmed the genetic condition that affects around 1 in every 65,000 newborn babies. “For the first 48 hours of Isla’s life I was numb, scared, sad and anxious all in one,” she recalls. “My friend and I were talking and what she said to me that day made me pull my act together and focus - she said that Isla was sent to me for a reason and that reason was to teach me unconditional love and compassion.” There have been many times that Kylie thought she would lose her daughter.

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Isla needed a breathing tube from seven weeks old after an operation to open a nose cavity failed and in the first two years of her life she had two surgeries to separate her fingers on both hands. She’s also had 2 skull surgeries to separate the fused skull to allow brain growth, grommets inserted to help ease ear infections, a tonsillectomy and adenoid removal to help with her obstructing sleep apnea. Isla also has hearing loss due to the bone structure in her ears and needs a bone conduction hearing aid for the rest of her life. Her most recent surgery was to allow more movement between her thumb and finger. The anguish at seeing your child in and out of surgery is scary but Isla is making progress even doctors didn’t anticipate. Kylie recalls being told it was doubtful that Isla would ever walk because she also had hip dysfunction. “One of her sockets isn’t formed properly and the joint doesn’t sit in the socket of the other one so this causes Isla pain and this is the reason why the doctors thought she wouldn’t walk unaided until she had surgery to fix this issue - which to our amazement she did.” Isla will need around four hip surgeries throughout her life. She also has a kidney condition called hydronephrosis, which is excess fluid in the kidney, and will need another operation to correct this in the future too. The cost of treatment is phenomenal, and Kylie has been overwhelmed by community support for Isla - with a number of fundraisers held to help cover costs with regular travel to Melbourne from Tasmania for surgery. www.sourcekids.com.au

But there is an element of society that still has a long way to go for Isla to be fully accepted. “Isla is accepted by most adults in the community but children are not so kind to her outside of our family, friends and the Northern Support School she attends,” Kylie states. “They run from her. They say she is ugly. They scream because they say they are scared of her, which is absolutely heartbreaking. “My 13-year-old even gets bullied at school because of the way Isla is - it’s awful. “My greatest concern for Isla is that she will be okay once I’m no longer here to protect her - but I guess that’s every parent’s fear.

“ I JUST WANT MY BEAUTIFUL GIRL TO BE LOVED, HEALTHY, HAPPY AND ACCEPTED.”

FaceUp was born out of similar fears and motivations. The Western Australian charity is dedicated to supporting and empowering people with visible facial differences and their families. It was established by Sipho and Thembe Moyo, parents of

JAYDEN, NOW 5, WHO HAS A RARE CONDITION CALLED NASAL ENCEPHALOCOELE WHICH DEFORMED HIS NOSE - THEIR LITTLE BOY’S BRAIN WAS GROWING OUTSIDE HIS SKULL. They were disappointed with society’s perception and attitude towards their son and the lack of psychosocial support available. They turned their desperation and loneliness into a positive platform by creating the first charity in Australia aimed at supporting people with visible facial difference. “FaceUp is a community that brings affected families together to share friendship, belonging and acceptance,” explains Thembe. “This has been done through community events, like parent support groups and empowerment seminars where guest speakers talk about their own life stories and experiences of living with facial differences.” Through social media, FaceUp has published inspirational stories of people living with visible facial differences and raised awareness of their experiences.

in the company of others who are experiencing similar challenges.” Neither Jayden or Isla may be Hollywood movie stars, but the five-year olds are standing up for standing out in their own ways - and that deserves a standing ovation. To find out more about FaceUp, visit www.faceup.org.au

“It helps other individuals and families to relate and take comfort that they are not alone, and to possibly bring hope for the future,” Thembe says. FaceUp is a founding member of Face Equality International, a global alliance of charities that work together to be a voice for change for people with facial differences to be treated with equality. “The feedback from families in our community has been very positive, with reports of feeling connected and accepted, and comfort in being able to walk the journey with other families who understand what they are going through,” . “It has been a real joy to see the opportunities that FaceUp has created for children with facial differences, and their families, to feel “normal”

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DID YOU KNOW

HOSPITAL SERVICES

Did you know?…

HOSPITAL SERVICES for you and your child

MEERKATS, MEDITATION SPACES, SCHOOL ROOMS AND ART TRAILS ARE JUST SOME OF THE WONDERFUL RESOURCES ON OFFER IN HOSPITALS TO HELP EASE THE PRESSURE OF A STAY FOR PATIENTS AND THEIR FAMILIES.

The following organisations provide amazing services in hospitals all around Australia:

STARLIGHT CHILDREN’S FOUNDATION Starlight is the only organisation to have a permanent presence in all major children’s hospitals around the country. While health professionals focus on treating the illness, Starlight is there to focus on the child and their family’s wellbeing. Their programs include:

STARLIGHT EXPRESS ROOMS These rooms are a medical-free haven for sick kids and their families seeking a break from the relentless cycle of treatments and procedures. With Captain Starlight and a host of wonderful volunteers at the helm, the rooms are unique spaces offering enjoyable activities such as watching DVDs, competing with friends & family on gaming machines, joining Captain Starlight in a jam session and heaps more.

LIVEWIRE Teens love being social but having a chronic illness or disability can leave them feeling alone or disconnected. This is where Livewire comes in running creative workshops in hospitals around the country covering everything from music and photography to film-making and coding. In the evenings, the

Starlight Express Room becomes a space for teens to socialise and chillout. There’s also a Livewire online community for anyone confined to their bed or hospital room.

CAPTAIN STARLIGHT Meet the superhero capturing sick kids’ imaginations and creating a healing environment filled with laughter, entertainment and joy. Captain Starlights are a talented bunch who use dance, music, art or performance to help kids through their most challenging moments. They also produce and broadcast Starlight TV, a fun twice-daily show broadcast in every hospital around Australia. More info at www.starlight.org.au

RONALD MACDONALD HOUSE CHARITIES RMHC provide a range of programs to help families with seriously ill children stay together and close to the care they need. The 18 Ronald Macdonald Houses across Australia keep families under one roof, close to the hospital. Families can also benefit from the compassionate support of volunteers and staff, and the companionship of other families who are navigating a similar journey. The charity also provides in-hospital rooms where families can rest, recharge and take a break from the ward. Additionally, RMHC has five Retreats in picturesque locations around Australia 60

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providing a peaceful getaway from the everyday, where families can simply be together in a tranquil setting. More info at: www.rmhc.org.au/

THE HUMOUR FOUNDATION’S CLOWN DOCTORS The Humour Foundation provides clown doctors in 24 hospitals across Australia, interacting with kids, hospital staff and families over 240,000 times a year! Clown Doctors are medical clowns – highly trained, professional performers who spread ‘doses’ of fun and laughter throughout the hospital. They work in partnership with medical professionals to divert children during painful procedures, calm and distract in emergencies, assist and encourage during therapy and more. www.humourfoundation.org.au

DELTA DOGS The Delta Society’s Delta Therapy Dogs brighten the lives of an estimated 20,000 Australians in hospitals and care facilities every week. The program is the largest of its kind in Australia with over 1000+ volunteers and their special dogs making regular visits to health care facilities to offer the wonderful benefits of pet therapy, spend time with patients and offer a chat, a floppy ear to listen and a paw to shake. www.deltasociety.com.au

SOME HOSPITAL SPECIFIC RESOURCES AND SERVICES INCLUDE: QLD QUEENSLAND CHILDREN’S HOSPITAL The Children’s Hospital Foundation provides a number of fantastic services, one of which is Juiced TV - the TV show made by kids in hospital, for kids in hospital. Patients and siblings are the stars of the show – hosting, interviewing and helping to produce each segment. Each filming day gives patients and their families the chance to get up close with amazing animals, hands-on with cooking, musical workshops and arts and crafts, kick around with sporting stars, and even meet their favourite celebrities and idols. The team has recently launched a mobile app - the ‘Juiced Box’ - allowing patients in regional hospitals to have access to all Juiced TV episodes, and soon, the chance to film their own content for Juiced TV.

VICTORIA We bet you’ve never visited Meerkats in a hospital before, but you can do just that at the Royal Children’s Hospital where an open-air enclosure is now home to five cheeky and inquisitive creatures. Staff from Melbourne Zoo care for them and provide meerkat education sessions every day. At Monash Children's Hospital the animal entertainment comes in the form of your own pet as they have a dedicated pet park where your pet can come to visit! For entertainment of a different kind, both hospitals have a Hoyts Beanbag Cinema which screens family friendly, recent release movies. RCH also has a wonderful, soothing space for parents and patients to regroup, reconnect or simply be. Murrup Biik provides a sanctuary for silence, prayer, contemplation or meditation. As well as more traditional prayer spaces there is a beautiful outdoor meditation and peace garden with water feature.

NSW In Sydney, art forms an important part of the healing process at The Children’s Hospital at Westmead – the hospital is a registered art gallery with a number of Art Trails throughout the buildings. Children can get involved with two art initiatives; Operation Art - a program which encourages young people to create artworks for the hospital and The Youth Arts Program - a creative program for adolescent patients. Activities include photography, video, ceramics, sculpture, drawing and painting, creative writing, printmaking and craft. At Randwick hospital in Sydney, Fairy Sparkle provides the magic with her fairy garden – a retreat for patients and siblings to visit where they can hunt for gnome and fairies, find costumes to dress up in and other magical things. A bedside visit from Fairy Sparkle can also be arranged.

Find out more at juicedtv.com.au

Not quite as fun as TV, but very important, Queensland Children’s Hospital School (QCHS) is a state school for children from Prep to Year 12 based inside the hospital. Continuing to learn helps keep kids brains active and also provides a distraction from being in hospital.

At Perth Children’s Hospital, Kulunga Moort Mia is a culturally sensitive space where Aboriginal families can rest or make refreshments during their hospital visit. Kulunga Moort Mia is also home to Djerapin, one of the PCH’s large scale artworks. Created by seven artists from the Kidogo Art Institute, Djerapin, which means ‘happy’ in the Noongar language, features two glass walls printed with richly coloured Aboriginal designs and five dog sculptures, back-lit with a changing sequence of LED lighting. Another important space at PCH is the Telethon Kids Discovery Centre - a fun and interactive centre full of games designed to get kids, and adults alike, excited about science, health and research. Through six digital interactives offering more than 25 different games, as well as a range of tactile exhibits, children can explore the human body and learn what researchers are doing in the Institute’s laboratories.

ISSUE 21

SPRING 2019

DISABILITY

EXPO BRISBANE Flashback to our Brisbane Expo

What a great couple of days we had at our second Brisbane Expo in July! Thousands of you came along and took the opportunity to talk to service providers, try out products, listen to speakers and, most importantly have lots of fun. We loved meeting so many of you – roll on 2020 when we’ll be hitting up Brisbane and Melbourne again, and - for the very first time.Sydney!

! K C A B H S A L F What a great couple of days we had at our second Brisbane Expo in July! Thousands of you came along and took the opportunity to talk to service providers, try out products, listen to speakers and, most importantly have lots of fun. We loved meeting so many of you – roll on 2020 when we’ll be hitting up Brisbane and Melbourne again, and for the very first time - Sydney!

ISSUE 21

SPRING 2019

www.sourcekids.com.au

N O S WHAT' CALENDAR OF

October

4-30 Steptember – take 10,000 steps a day to support people living with cerebral palsy. www.steptember.org.au

1-31

7 One the Bear, Auslan interpreted performance, Sydney Opera House www.sydneyoperahouse.com/events

WHAT'S ON

EVENTS

September 7 One the Bear, Audio described performance with preshow tactile tour, Sydney Opera House

SOURCE KIDS

Down Syndrome Awareness Month

3 Laser Beak Man, Auslan interpreted performance & Relaxed performance, QPAC, Brisbane qpac.com.au/event/ 6

World Cerebral Palsy Day

7 A Not So Traditional Story, Auslan interpreted performance, Melbourne Arts Centre www.artscentremelbourne.com.au/whatson/kids-and-families 12 R U OK? Day www.ruok.org.au

20 Laser Beak Man, Auslan interpreted performance, Melbourne Arts Centre www.artscentremelbourne.com.au/whatson/kids-and-families 21 Laser Beak Man, Relaxed, Audio described & Captioned performances, Melbourne Arts Centre www.artscentremelbourne.com.au/whatson/kids-and-families 21-27 National Week of Deaf People 23

International Day of Sign Languages

7 Erth’s Dinosaur Zoo, Auslan interpreted performance, Sydney Opera House www.sydneyoperahouse.com/events 10

World Mental Health Day

Variety Musical Picnic - Belconnen, ACT www.variety.org.au/nsw/events/

11 Meeting Mozart, Sing & Play Session, Sydney Opera House www.sydneyoperahouse.com/events 13-19 National Carers Week – events taking place around Australia. www.carersweek.com.au/events 18 Loud Shirt Day – get loud for deaf and hearing impaired children. www.loudshirtday.com.au 18 International Developmental Language Disorder (DLD) Awareness day www.salda.org.au

25 Starlight Children’s Foundation Kick for Kids tournament starlight.org.au/kick-for-kids-soccertournament

November 13

World Kindness Day

15 Spot, Auslan interpreted performance, Melbourne Arts Centre www.artscentremelbourne.com.au/whatson/kids-and-families 16 Spot, Relaxed performance, Melbourne Arts Centre www.artscentremelbourne.com.au/whatson/kids-and-families 26 Variety Kids Xmas Party (Sydney), ICC Sydney, Darling Harbour www.variety.org.au/nsw/events 27 Variety Kids Xmas Party (Adelaide), Adelaide Showgrounds www.variety.org.au/sa/events 28 Variety Kids Xmas Party (Newcastle), McDonald Jones Stadium, Broadmeadow www.variety.org.au/nsw/events/ 30 Special Children’s Christmas Party (Brisbane) – Brisbane Convention & Exhibition Centre www.sccpau.com.au/brisbane.html

ISSUE 21

SPRING 2019

STATE DIRECTORY

VICTORIA / TASMANIA

Scholarships? Education aids? All-abilities play? Assistance dogs? Mobility equipment? Learning assistance? Amazing experiences?

VICTORIA / TASMANIA

Communication devices? Variety - the Children’s Charity is here to help! Variety – the Children’s Charity is committed to empowering children living with illness, disadvantage, or disability to reach their full potential. We believe all kids deserve the chance to achieve their dreams, regardless of their ability or background. Contact us to learn how we can help your child or orgnanisation via variety.org.au.

STATE DIRECTORY

VICTORIA / TASMANIA

Introducing...

We know Paediatrics

Topcat Treasure, specialising in washable continence products and supplies

106 Bailey Street Grovedale 3216 • Ph: 03 5244 0844 Email: info@geelongwheelchairs.com.au

www.geelongwheelchairs.com.au

We are excited! We have finally released our new PSD Continence & Sensory Underwear range – a cool, funky continence underwear range for children & adults of all abilities! Recommended by Australia’s Leading Continence Clinic’s such as Conquip Continence Services, be sure to ask for these colourful, quirky products at your next Continence Assessment. Available Australia wide.

Showroom: 13/200 Canterbury Rd Bayswater North 3153 Phone 8201 7137 www.topcattreasure.com.au

We are a family run business providing innovative equipment solutions to facilitate mobility and inclusion for our littlest users. Our extensive range of equipment, sourced from leading suppliers gives us the ability to build a chair that is custom made for your child. Our primary aim is to make comfort a reality and supply equipment that is safe and fit for purpose.

Servicing Melbourne, Geelong and Victoria’s South West

Looking for a dentist for your child? Providing specialist care for your child in a caring environment. Dr Evelyn Yeung B.D.S., D.Clin.Dent. (Paeds.) Dr Linda Huang B.D.Sc/, M.Phil,D.Clin.Dent. (Paed)

For your next party please call Bec Burch 0408 893 486

Give your child new freedom and independence with a TRIVEL adaptive Trike! • Attain your therapy goals all whilst having fun! • Designed for children from 4 to 10 years old. • Featuring seat adjustment, lateral support back, adjustable and folding handlebar. • Explore the great outdoors with your child… with a Trivel Trike. Ph: 1300 953935 E: sales@stepaheadpaediatrics.com.au www.stepaheadpaediatrics.com.au

181 Balcombe Road, Beaumaris Ph. 9583 1378

reception@happysmilesforkids.com.au HSKsMrMiso

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STATE DIRECTORY

VICTORIA / TASMANIA

STATE DIRECTORY

VICTORIA / TASMANIA

Start planning today to protect them tomorrow

Wills Trustee Services Powers of Attorney Executor Services

statetrustees.com.au STL_Source_Kids_May_2019_v5.indd 1

28/05/2019 4:08:39 PM

STATE DIRECTORY

VICTORIA / TASMANIA ADVERTORIAL

PEOPLE OUTDOORS Adventure for all!

People Outdoors is a branch of the Australian Camps Association (ACA) that was set up some thirty years ago to provide outdoor focused but comfortable camp experiences for people with disabilities. Over that time we have delivered hundreds of fantastic camp programs for thousands of people across Victoria. Nowadays we all know that being outside is good for us, as is being active – so the benefits of combining both in a wellresourced and supported camp setting are doubly valuable. Camps are also excellent at helping people to challenge themselves and to try things that they wouldn’t normally do – and at encouraging campers to bring these new found skills and confidence back to everyday life. All People Outdoors camps take place at fully accredited ACA member venues, the staff of which are experts in running activities such as canoeing, ropes courses, bush exploration, cycling, etc. This allows the People Outdoors team to focus entirely on providing whatever support and encouragement each individual camper may need, so that they can participate in these activities to the best of their abilities. Camps are about more than canoeing or ropes courses. People Outdoors camps are

carefully planned to foster friendships and social connection, not just with others who may have a disability but with the broader community at camp. As one parent says: “My daughter loves the volunteers at People Outdoors, she finds peer interaction difficult but having the volunteers of all ages gives her the opportunity to feel part of a friendship group. We love turning up at drop off and hearing lots of different people calling her name and making her feel so welcome.” People Outdoors programs are age specific and include overnight, weekend and school holiday camps, including our Adventure for All program open to everyone, whether they have a disability or not. At the end of the day, camp is about having fun with friends old and new, having a go and enjoying the great outdoors. People Outdoors is a registered NDIS service provider but if you don’t have an NDIS Plan don’t worry – you are still very welcome to join in with People Outdoors camps. Just ask!

AU S T R A L I A N CAMPS ASSOCIATION

PEOPLE OUTDOORS Adventure for all

For more details visit www.peopleoutdoors.org.au 03 9863 6824 email: peopleoutdoors@auscamps.asn.au

momo Trikes & bikes for increased independence. Ultra-low step through with an extensive range of optional accessories including; postural supports, rear steering, brake controls, power assist and more.

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Source Kids Momo Advert V3.indd 1

13/8/19 3:28 pm

STATE DIRECTORY

NSW / ACT

CPA Early Childhood Intervention

Supporting babies and children with a range of neurological and physical disabilities to become their best self. 1300 888 378

ask@cerebralpalsy.org.au

cerebralpalsy.org.au ¹Morgan, C., Novak, I., Dale, R. C., Guzzetta, A., & Badawi, N. (2016). Single blind randomised controlled trial of GAME (Goals. Activity. Motor Enrichment) in infants at high risk of cerebral palsy. Research in developmental disabilities, 55, 256-267.

NSW / ACT

Through our clinically-backed early childhood intervention programs, and experience leading one of the world’s largest early intervention clinical trials to improve movement and cognition¹, we give you science-backed hope.

STATE DIRECTORY

NSW / ACT

Meet MeetLachie… William…

he’s part of our Allowah Family he’s part of our Allowah Family

Can you tell me the story of your family? How did your family come to be where What is your family’s story? you are today?

How have you found the care at Allowah? What do you think the best If you were to part about Allowah is? describe your fam-

How did you come to be part of the Allowah community?

ily in three words, what would they be?

We are a husband and wife team. We have an older son, Ben The intervention is very good. That has increased over the past - he’s twenty. Our other son, Lachie, is almost fifteen. He was 8-10 years. Prior to that, this was a tiny little hospital, there wasn’t born like this, he has a genetic mutation. He was only really much room for anyone! The clinics are great. It is excellent to have diagnosed about five or six years ago. Prior to that, he was those guysAcome to us, instead us having to go to Westmead. mad-house. That’sof three words! My husband, Rob, and I have three sons, Kyle, David just in the ‘Cerebral Palsy box’. We’ve pretty much known Most of our kids have extremely vulnerable systems, so to put and William. Kyle, my son from my previous marriage, from birth that there was something majorly wrong. He was them in an environment where there is lots of illness is just not What have your experiences been, both negative and posis twenty. I raised him as a single Mum for six years. having seizures in utero so we were kind of semi-prepared worth it. So, it isof great thatawe canwith do clinics here. What are some of itive, raising child disabilities? When I met Rob, I didn’t really want anything to do with for something not being right. When he grew-up and missed the challenges and joys? him I wasn’t interested in a relationship. But, he was his milestones, that confirmed it for us. I think you still think Like anything, there are ups and down at Allowah. When new persistent! We fell in love, gotout engaged and got married. that a magic pill will fix it and it will all turn fine. We’ve staff come in and don’t know your child very well, that can In terms of the negative, I struggle to give all my boys equal Kyle walked me down the aisle, and gave a speech at been using Allowah since he was about two and a half, I found be a bit tricky. Lachie could look like he’s having a seizure the wedding every girl in the room cried! Then, we had he’stime and attention. Whenmovements William is home heversa. takes up all Allowah through a friend who used to send her son here. when just having his dystonia or vice David. William came as a surprise, a year later. my time and while and David is still But, it’s like any mother with Kyle a child - to put understand, their child initthe hard. I try toisspend much time as I canthey withhave all of them. care of someone else a big as deal, let alone when We knew something was wrong with William when he Kyle old never enough to look after himself I still like to high needs. I’misstill 100% comfortable, butbut that is just with when I can, take him outasfor brunch was in my tummy. Once he was born, he just wouldn’t because I spend am histime Mum! It ishim about being as Icomfortable you and things that. David I will hang out too, we go to stop crying. He cried all day and all night. I took him to a be and can this is thelike best I will get, and I think. the movies together. paediatrician, who told me he was ‘just being naughty’. Happy, supportive and accepting. I told them that a six-month old can’t be naughty, they The other challenge of having a child with disabilities is don’t know how. Finally, William was diagnosed with a that you’re limited in what you can do with them. I can’t rare condition which effects the brain. It explained why just take William to a trampoline park, the other kids are he never slept and couldn’t eat. He started having seitooThe bigchallenges and it would too dangerous. arebe definitely that the whole family zures. It was a hard time. David was only one, so I hadThere’s a lot! gets affected. It is hard on our son Ben. We can’t just pick up two babies. I never saw David, was always It depends, because we live on the Central Coast.I Generally, I at the hospital Having William was a big learning curve family. I and go on holiday. We can’t just go to the shops or for theour movies with William. I would drop Davidusoff at day-care and then book in for clinics - which is great because it saves from going haveBut, worked withinpeople for a long time or all the beach. Ben was his firstwith yeardisabilities of school when to Westmead. We arewould at Allowah 6-8his weeks, dependingplace. on Rob take every him to grandparent’s I spent Lachie wasbut diagnosed so hehad transitioned well into it. He’s never my husband never encountered anything like what’s going on.my Sometimes we just need break or he needs days with William in a hospital. really known else. this.anything But, it has made him a much more gentle, open and a break from us. He needs time with other people. And he’s honest person. It has made us and our marriage resilient. I completely reliant on usI for 24/7 care. So, it is nice just to have that Finally, met a wonderful paediatrician who told me andthat I have been together since welife were verythrow at us know now there is nothing that could break - be a regular family a while. Allowah lets do that.Allowah, it My husband to go look for at Allowah. As soon asus I visited young - sothat there challenges weare couldn’t copethere. with. We eventually formed a appealed to me. Everyone there was so nice and when role each. I do most of the caring, Rob does a lot of the helping, William first started coming there, I don’t think he cried but generally it is my been role to the hands onexperiences care. I don’tin regret There have sodo many positive raising at all, he loved it so much. That’s how we knew it wasthat the and I William. don’t think would if I to had a regular kid, it’s He it brings sochange much joy our family. Whenever we just the way we are. right place. get together with our extended family they all say, ‘He’s so great, look how far he’s come!’ William’s smile, like all the It is difficult, especially on the Central Coast. There’s nothing There are positives as well. Raising a child with disabilities other kid’s at Allowah, is the best. All he has to do is smile makes you so much less worried about the stuff that goes on on the Coast. Coming into Sydney so often is not ideal for me. andIthe melts everyone’s hearts - especially nurses! in the world. centres you and you think, ‘well, thatthe doesn’t There has been a few mad drives down the freeway if he’s been really matter’. transferred to hospital! But, I just have to live with that.

If you were to describe your family in three words, what would they be? How does your relationship with Allowah work?

What were your experiences of trying to fund suitable assistance, support and care?

What are some of the challenges and joys of raising Lachlan?

STATE DIRECTORY

NSW / ACT

What are some of the best memoWhat some of the big life ries youare have with William? lessons you have learnt while

When he first walked, that was a special day. It was Christmasraising day, and heyour would child? have been about three and a half or four. We were at my in-laws and he pulled himself up I’ve edge learntofnot worry and about themade small his stuff, you on the thetolounge then way to just the can’t. Things changein sothe quickly. lucky I other lounge. Everyone houseWe’re lost it!pretty We were all- so work so hard to keep Lachlan well. I’ve had to learn to excited, screaming and shouting. Even David was saying, be a lot more assertive and go for it. You’ve got to find ‘He’s doing it! He’s doing it!’ your voice. You just get to know yourself, you know what you can handle. Recently, William has started putting sentences together. We were at the neurologists the other day and they said to him,What ‘How’s David?’ He said, ‘Good.’ you They asked, advice would give‘How’s to aKyle?’ He said, ‘Good’. Then, they asked him, ‘And, how’s Dad?’ and family just a William said, ‘Awho pest!’ I had nearly lost it, itbeen was so given funny!

diagnosis?

When I was driving William up to Allowah, we had the radio on and Colby Caillat’s song ‘Bubbly’ came on. I used to sing first thing don’t Google anything abouton it toMy William whenwould he wasbe, little, in hospital. When it came it. Icar, don’t thinkwas there’s a great to of involve yourself in the William singing it at need the top his lungs. He 100% in disabilities, we still had to have a regular knew it, word for word. He must have been a good listener! life and our other child did too. I think you can get a bit bogged down in it. There’s a bit of a competition Thesometimes doctors told us that he would never walk, never eat of who has got the most disabled kid, it’s andreally neverbizarre! talk. And, look at him now! He’s doing all of that. Imagine what else he will be able to do. You have to have a good balance. Just take each day as it comes. It is a hard road, keep looking at the big picture. You’re not alone - keep your family close. You just have to centre on your kid. There’s a lot of people out there to help, you have to learn to accept the help. That’s hard, I still struggle with that. It’s a life lesson which you have to learn along the way. Like any child, there’s no book.

What is your relationship with Allowah like? What would you say to a family considering coming to Allowah?

William comes here every fortnight or so during the term and stays a few days a week during school holidays. He loves it! I’m pretty sure Monty is his best friend. He loves Ruby too.

I actually was recently talking to a family who is considering trying Allowah. I told them, ‘Do it, absolutely!’ I know that What are your dreams or hopes William is getting such good care there. The staff are well for your child and family? trained. William gets to do great stuff with Allowah - he even went to the Easter show. On the weekends, I am busy Most parents like me are concerned about their cleaning the house and looking after the whole family, I child’s care, after we are no longer here. Lachie has don’t have time to bake a cake with him. But, he can do a great ticker, so he could live for a long time. We that at Allowah! The activities put on areit’s really don’t want our older son to bethey responsible, not good, and Rowena is fantastic. his responsibility. I just want to know that Lachie will be safe. Allowah has been so good for us. When William needed to I have just want him to have thethey besthelped life he with can have. regular blood tests, that. I’m When he not beingtounrealistic here, he’s not going be a with that. needed have seizure monitoring, they to helped Rhodes Scholar. He’s never going to ride a bike. But, as long as he is happy. And he is - he’s a happy little William receives the same love at Allowah than he would at bubble, in his little world. That’s all we want. home. He loves the attention! On the car trip here, he knows where we are going and says, ‘Allowah! Yay!’

What are your dreams and hopes for William and your family? I would love for William to be independent, which I’m sure is the dream of every parent of a disabled child. I would love for him to be able to feed and dress himself. Kyle and David have already told me that they will look after William when I’m not around anymore. But, I don’t want that weight on their shoulders. I’ve said to them, ‘I will put him somewhere and you can take him with you everywhere you can. Share the load’. After all, they will have their own families. But, mostly I just want for William what I want for my other boys - for them to be happy and healthy. If they are happy and healthy, that’s all that really matters.

Allowah provides Disability Support services for children aged 0 - 18 years with complex disabilities and medical conditions.

disability support services

Complex Disability and Health Provider

• Short term accommodation Planned or Emergency • School Holiday programs • Post surgery care • Early intervention • Therapy Services • After school care • Support Coordination (children and adults with complex needs) • Many other supports including Assessments, Equipment advice and so much more

Allowah 8 Perry St Dundas Valley NSW 2117 02 8877 3400 admin@allowah.org.au

allowah.org.au

STATE DIRECTORY

NSW / ACT

Need a helping hand? Variety grants make life a little easier with practical help for kids in need • Medical Equipment & Supplies • Therapy • Wigs • Mobility Equipment • Communication Technology • Education Supplies • Vehicle Modifications

Reach out to find out how we can help

varietygrants.com.au

Sick

Disadvantaged

Special Needs

STATE DIRECTORY

NSW / ACT NORTH WEST SYDNEY | WESTERN SYDNEY | SOUTHERN HIGHLANDS

Leaders in early intervention and disability support • Allied health therapy and assessments: – Speech-language pathology – Occupational therapy – Dietetics – Psychology

• Feeding and nutritional management • Behaviour support • Autism diagnosis • Cognitive assessments • Therapy groups

Visit us in clinic or we can see children in their natural everyday environments such as at home, child care centre or school. Our clinics are also designed to provide telehealth services to families that reside in remote, regional or interstate locations.

02 9622 8500

growingearlyminds.org.au Growing Early Minds is an initiative of Growing Potential Ltd.

FIGHT WITH ME FIGHT FOR ME Help us fight children’s genetic diseases.

STATE DIRECTORY

NSW / ACT

REGAIN YOUR FREEDOM... Ƚ DISABILITY VEHICLE HIRE & SALES Ƚ GENUINE FRIENDLY SERVICE Ƚ REGISTERED NDIS PROVIDER

Phone 0456 017 779 for your next holiday hire or purchase

Creating a lifetime of opportunities for children with autism At AEIOU Foundation, children with autism aged 2 to 6 receive specialist therapy and care to develop essential life skills that last a lifetime. Contact us for advice on NDIS access, or for details about upcoming open days and workshops.

QUEENSLAND

Find a centre near you, by visiting www.aeiou.org.au or calling 1300 273 435.

STATE DIRECTORY

QUEENSLAND

Let CPL & Mylestones help you & your family chase the best in life.

LEGO HEAVEN!

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

Whether it’s allied health & early intervention or employment support, we’re here to help.

Shop D, 1 Finucane Road, Capalaba QLD 4057

Phone: 07 3390 1288

www.bricksnfun.com.au

Visit us at cpl.org.au or mylestones.org.au

Services we offer: Physiotherapy Paediatric Physiotherapy Physio Exercise Sessions Exercise Physiology Gym Consults

Remedial Massage Dietetics & Nutrition Occupational Therapy Therapy Assistant Hydrotherapy/Home Visits

P: 07 3548 3970 E: ndis@reclaimhealthandrehab.com.au

We believe ALL kids deserve a fair go. Does your child love to sing? We would love them to join Queensland’s brand-new all-inclusive choir for kids aged 8 to 17 of all abilities. There is no need to audition as it is a wonderful opportunity for kids of ALL abilities to learn to sing (for free) and where possible some choreography will be adapted to suit individual abilities.

Website variety.org.au/qld Email kidssupport@varietyqld.org.au Phone (07) 3907 9300

STATE DIRECTORY

NSW / ACT

“Our support is unique to each individual” Quality In-home supports for people with disabilities living in QLD • Accommodation support • Personal and household care • Community access • Community and lifestyle support • Respite and advocacy

Why choose Your Way Support Services?

Erin Christian—Managing Director

• A unique service • Advocate what’s important • Proactive responsibility • Direct communication • Working funding packages • Competitive rates • Autonomy and choice • Employment opportunities • Community engagement

Creating sunshine and fun times supporting kids to adults Suite 9, 42-44 King Street, Caboolture QLD 4510

www.ywss.com.au

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QUEENSLAND

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STATE DIRECTORY

QUEENSLAND

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ISSUE 21

SPRING 2019

www.sourcekids.com.au

COMPETITION

SOURCE KIDS

COMPETITION CORNER

WIN!

WIN ONE OF THESE GREAT PRIZES BY ENTERING ONLINE AT www.sourcekids.com.au/win WIN A MAX & ROSE LOW FEEDING CHAIR FROM MODERN TEACHING AIDS, VALUED AT $99.95 The Max & Rose Low Feeding Chair is versatile and modern high chair that can offer comfort and flexibility, making meal times interactive for infants and toddlers. It comes with a wipe clean surface area, and a removable padded cushion cover.

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WIN ONE OF TWO COPIES, SPECIAL BOOK BY MELANIE DIMMITT, VALUED AT $32.99 SPECIAL is an uplifting, candid companion that dives deep into those questions, doubts and fears we go through in the early stages of navigating our child’s disability. This beautiful book shares true stories, expert advice and actionable coping strategies for anyone whose life has taken an unexpected turn. www.venturapress.com.au/special

WIN A SPRINGFREE COMPACT ROUND (R54) SMART TRAMPOLINE + TGOMA DELIVERED TO YOUR DOOR, VALUED AT $1673.00 Put a spring in your step by entering this amazing competition thanks to our friends at Springfree Trampoline. And, did you know that Springfree Trampoline has now been NDIS approved in all states and territories throughout Australia? Springfree’s innovative design is the world’s safest, highest quality and longest lasting trampoline supported by a full 10-year warranty. www.springfreetrampoline.com.au

WIN!

WIN AN ADVENTURER’S PACK INCLUDING A PAIR OF EMS FOR KIDS NOISE REDUCTION EARMUFFS, PLUS A LANI THE CARNI STREETWEAR GIFT VOUCHER, VALUED AT $138.99 Ems for Kids noise reduction earmuffs help little ears find ‘quiet’ in a noisy world, help combat sensory overload, filter out distractions and increase calm. Ems for Kids is a registered NDIS provider and with 3 colourful product ranges - BABY (0-18m), KIDS (6m+) and AUDIO (6m+), - there is an earmuff to suit any noisy environment at any age.

WIN!

www.earmuffsforkids.com.au Lani the Carni is a unique brand of streetwear for girls featuring designs with careful sensory considerations including soft materials, no choking necklines or itchy clothing tags and minimal seams to ensure maximum comfort for any activity. Dancers, aerialists and adventurers alike will love the freedom and whimsy of Lani the Carni range. www.lanithecarni.com

WIN A BACK ZIP WONSIE VALUED AT $49.95

WIN!

The unisex Wonsie back zip bodysuit is specially designed to help deter challenging behaviour by preventing inappropriate self-undressing and access into nappies and underwear. The off-centred back zipper ensures comfort when lying down and the press-studded tab helps to prevent access to the zipper. The size range caters for toddlers through to adults making them popular for aged care and can be worn day or night. www.wonsie.com.au/collections/back-zip-wonsie ISSUE 21

SPRING 2019

Permobil Koala

The chair that grows with you.