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HELLO

Hello and welcome to our Spring issue of Source Magazine! No-one knows the experience of raising a child with disability quite like another disability parent. The appointments, the worry, the advocacy, the constant thinking three steps ahead, and all the little things that other people simply don’t see. This issue, we have two beautiful, thought-provoking reads from our two columnists and disability parents, Bec and Monique. Bec reflects on medical parenting, grief and finding your way back to the parts of yourself that can get lost in caring, while Monique tackles the big question so many parents carry: who will know and support my child when I’m no longer able to do it all? They’re two mums who know this life from the inside, and who put words to some of the things so many of us are feeling but don’t always know how to say. Medical parenting is a thread that runs through much of this issue. We look at the things that can make medical experiences a little easier, from helping kids manage medical anxiety to meeting the clown doctors bringing some much-needed fun into hospital. We’ve also rounded up products that can take some of the pressure off during hospital stays, and looked beyond the ward at the services that can support children and their families. Then, as spring rolls around, we’re getting out of the hospital and into the fresh air. This issue is packed with bikes and riding, from practical tips to help your child build their riding skills. Whether your child is just getting started or you’re looking for the right equipment to help them ride further, there’s plenty of inspiration here. And, because the person doing the caring can so easily disappear into the background, we’ve also got a timely reminder to look after you. I hope this issue gives you something useful, something that makes you think, and perhaps a few moments of recognition along the way. Because sometimes it helps enormously to read something and think, “Yep. Us too.” Thanks for being here with us,

Emma x

PUBLISHER/CEO

38 Contents SPRING 2026 5

We love

Louise Conn

8 Every new

GRAPHIC DESIGN Emma Henderson

HEAD OF SALES & BUSINESS DEVELOPMENT Matthew Rainsford, matthew@sourcekids.com.au 0409 418 362

PUBLISHER/CEO Emma Price

HEAD OF EVENTS Naomi Sirianni, naomi@sourcekids.com.au 0447 755 043

4 SO U RCEKI DS .CO M . AU

SOURCE CO. PTY LTD PO Box 690, Noosaville QLD 4566. ABN 63 650 961 489 sourcekids.com.au Send all letters and submissions to info@sourcekids.com.au

10 ways to support

with an ending

Diagnosis: Noonan

syndrome

most serious kind

Understanding slow

of silly

processing speed

Products: hospital

Products: ready,

helpers

set, think

Practical tips for

Monique Power:

autism families

security blanket

navigating healthcare systems

22 Helping your child cope with medical

26 Beyond the ward: services

your child’s bike riding journey

Clown doctors: the

a guide to hospital CONTENT EDITOR Nicole Davis

to NAPA

beginning starts

anxiety

M a g azi n e

profile: the road

Source AT files: built to ride

66 Watches & reads

72 Product review:

50 Looking after you

bikes & trikes

Source Q&A: Christine’s story

58 Better together: parent-child interaction therapy

Editorial and advertising in Source Magazine 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 Magazine is subject to copyright provisions. No part of this publication may be reproduced without written permission by the publisher.

sourcecoau

FUN STUFF

Possum Play Couch The Possum Play Couch is a modular foam play couch that can be transformed into everything from obstacle courses to cubbies and cosy corners. Its lightweight pieces encourage imaginative play, movement, gross motor development and sensory exploration, while also creating a safe space for children to climb, crash or relax. possumplay.com.au | @possumplaycouch

Q-assist

Moonbuddy

Q-assist is a range of thoughtfully

Designed to fit comfortably in little hands, Moonbuddy is a screen-free breathing companion that helps children slow their breathing and

support carrying out their day-

expands and contracts, giving children a simple rhythm to follow during moments of stress, anxiety homelifetech.com.au/products/moonbuddy

mobility aids and ramps for individuals who need additional

regulate their emotions. Its soft tummy gently

or overwhelm.

designed assistive devices,

to-day activities. From mobility ramps to bathroom aids – the best bit is that you can find their products at Bunnings! qepaustralasia.com.au/q-assist

BigPurplePhone Not everyone needs a smartphone with endless apps and complicated menus. The Australian-designed BigPurplePhone strips away the clutter, replacing it with large, high-contrast buttons, picture-based contacts and a simple interface that’s easier to navigate for people with cognitive disability, low vision or reduced dexterity. Features like voice-to-text messaging, an SOS button, scam call protection and optional carer management tools can help users stay connected while supporting greater independence and confidence. bigpurplephone.com.au |

@bigpurplephone

I SSU E 48 | S P R I N G 2026 5

FUN STUFF

Nightollie – the children’s bedwetting solution Nightollie is a bedwetting alarm designed to help children and teenagers develop dry nights with confidence. The gentle sound and vibration alarm alerts children when wetting begins, helping them learn to recognise the signals from their body over time. Australian designed and developed with input from a paediatric continence specialist, Nightollie provides a simple, supportive approach for families navigating bedwetting. nightollie.com |

@nightollie

Yoto Mini With stories, music, and learning on the go, this screen-free audio player is perfect for little hands and big adventures. Just pop in a Yoto card and take the magic anywhere! No microphone. No camera. No ads. au.yotoplay.com/ yoto-mini @yotoplay_au

Adaptive style Everyhuman stocks a great range of adaptive clothing including styles from Tommy Hilfiger Adaptive, combining fashion with thoughtful design to make dressing easier for people with a range of abilities. Featuring details such as modified openings, easy-fastening options and comfortable fits, the collection supports independence and confidence while keeping personal style front and centre. everyhuman.com.au |

@everyhumanau

Routine helper With easy-to-grasp magnetic picture tiles, children can see what comes next, build independence and feel a sense of achievement as tasks are completed. The timber tiles are also a breeze to wipe clean after an attack of the inevitable sticky fingers! secondscout.com.au |

@secondscoutau

I SSU E 48 | S P R I N G 2026 7

Every new beginning starts with an ending There is something about spring that quietly reminds us that life is forever beginning again. It doesn’t arrive with fanfare or urgency, but with a gentle persistence that is easy to miss if you are not paying attention.

fter the cold, the trees don’t ask permission to bloom. They simply do. After the longest nights, dawn still arrives, whether we are ready for it or not. And after the darkest seasons of our lives, something within us begins to shift too, slowly, gradually, towards light again. As I write this, I find myself sitting in a season I never imagined I would know. Recently, I lost someone I loved deeply. A soul who had walked beside me for most of my life. Someone I thought would always be there, woven into the fabric of my everyday world. I believed I understood grief. After all, medical parenting introduces us to grief long before death ever does. We grieve the life we imagined for our

8 SO U RCEKI DS .CO M . AU

children. We grieve milestones that look different, or don’t come at all. We grieve certainty, and the innocence that quietly slips away the first time your child is admitted to hospital, and you realise life can change in an instant. Over time, we become experts in trauma. Experts in hypervigilance. Experts in living with one ear always listening for the next alarm, the next seizure, the next phone call, the next

unexpected admission. We learn to read rooms, monitor machines, and anticipate risk in ways most people never have to consider. Yet this grief was different. It reminded me, with breathtaking force, that none of us truly know how much time we have. That life can change between one heartbeat and the next, without warning, without preparation, without permission. And strangely, it has made me think even more deeply about medical parenting and the families who live within it. Because if there is one thing parents of medically complex children understand, it is the fragility of life. We don’t just know it intellectually; we live it every single day. Hospital rooms become temporary homes. Chairs become beds. Machines

BEC GLOVER

become background music that we learn to sleep through. Our calendars revolve around specialists instead of seasons, and our nervous systems often forget what it More than a decade later, these still hold feels like to truly rest. true. Because caring is not a season for Many of us exist in a constant state of many families, it is a lifetime rhythm. fight, flight, or freeze. The inhale feels What has changed for me recently shallow. The exhale feels interrupted. is this: grief has sharpened my awareness Sleep is fragmented. Our identity slowly of joy. dissolves beneath medication charts, Not the loud kind, but the quiet kind. feeding schedules, emergency bags, and The kind that has always been there but appointment letters. is so easily missed when And perhaps Somewhere along the survival becomes our fullway, we stop asking who time occupation. spring is our we are. Instead, we become It is the brilliant twilight gentle invitation Mum. Dad. Carer. Nurse. star that catches your eye to remember. Advocate. Coordinator. after sunset, when the world Not to become Medical historian. We is still holding its breath. It is become everything everyone the warmth of the first spring someone new, else needs us to be. but to remember sun on your face after weeks But beneath all of that… indoors. Fresh air filling ourselves. To we are still there. lungs that have forgotten how gather back And perhaps spring is deeply they can breathe. our gentle invitation to It is waves arriving, together the pieces remember. leaving, arriving again. of who we have Not to become someone A bird singing outside a always been. new, but to remember hospital window. A nurse ourselves. remembering your child’s To gather back together the pieces of who favourite blanket or comforts. A volunteer we have always been. bringing coffee at exactly the right Years ago, I asked families what moment. A stranger smiling without sustained them through the marathon of expectation. caring. Their answers formed what I called These moments don’t erase pain. But the Focus 5s. they remind the nervous system that beauty still exists alongside suffering. And perhaps that is what hope really is. Sustainability How do we keep going I often think our children understand without burning out? this better than we do. Despite everything, they still laugh or Self-care share in a smile with the biggest glimmer Not indulgence, but of joy in their eyes. They notice bubbles. real nourishment. They reach for sunlight. They find wonder in places adults rush past. Setting goals They are not inspirational. They are Something beyond the next teachers. Reminding us that life is not only hospital appointment. measured by what we survive, but by what Social connection we notice. People who understand Medical parenting has taught without translation. me courage, patience, advocacy, and resilience. But perhaps its greatest Stress relief lesson is this: Small moments that Life was never waiting for us once the allow the nervous hospital stays stopped. Life has been system to soften.

happening all along. Inside hospital rooms. In the quiet between observations. Holding a sleeping hand. Watching sunrise from a ward window. Sharing a moment with another parent in the tea room at 2am. Stepping outside for sixty seconds of air. These are not interruptions to life. They are life. As spring unfolds, perhaps we can give ourselves permission to begin again. Not because everything has changed, but because we have. Like the phoenix, we rise, not untouched by fire, but shaped by it. Maybe this season is not asking us to be stronger. Maybe it is asking us to pause long enough to remember who we are beneath caregiving, grief, and survival. To re-imagine joy. To re-invent care for ourselves. To remember what was never truly lost. Because every new beginning starts with an ending. And perhaps this spring is the beginning of coming home to ourselves once again. ----By Bec Glover

Abou t Be c:

Rebecca (Bec) Glover is a mum, carer, and lifelong advocate for children with disabilities and their families. Her journey began through raising her daughter with profound and complex needs, giving her an intimate understanding of the daily realities, emotional load, and systemic barriers families face. Drawing on this lived experience, Bec founded Ruby & Ollie’s All Abilities Childcare and later The Inclusion Network to create practical, compassionate solutions where mainstream systems fall short. Bec now works alongside families, educators, and organisations to advocate for better systems, stronger support, and a future where every child, regardless of their needs, has the opportunity to be seen, supported, and included. Learn more at theinclusionnetwork.com.au

I SSU E 48 | S P R I N G 2026 9

CLOWN DOCTORS The most serious kind of silly

f you’ve ever spent any time in hospital with a child, you’ll know that hospitals operate in a completely different time zone to the rest of the world. Outside, people are arguing about school lunches, forgetting library books and wondering what’s for dinner. Inside, you’re measuring time in test results, appointments, ward rounds and whether your child has managed to eat three bites of toast. For many disability families, hospitals

10 SO U RCEKI DS .CO M . AU

aren’t a one-off experience. They’re woven into the fabric of family life. Some children have appointments every few months. Others spend weeks, months or years moving through a revolving door of specialists, therapies, procedures and admissions. You become weirdly familiar with hospital parking. You know where the decent coffee is. You develop strong opinions about waiting rooms. And you become acutely aware of how exhausting it can be for a child to always be the patient. That’s why the idea of Clown Doctors is so fascinating. Because on paper, it sounds slightly ridiculous. A clown? In a hospital? Really? Yet the more you learn about the program, the more sense it makes.

So what’s actually going on when that white coat and red nose walks through the door? Clown Doctors aren’t volunteers in costumes. They’re professional performers with specialist training in working alongside healthcare teams. They understand clinical environments, know how to read a room, and are there to support care, not interrupt it. The key thing – the thing that distinguishes them from well-meaning chaos – is the approach. They seek permission, build rapport, and meet each young person exactly where they are. The humour is affirming; they laugh

ALL IMAGES SOURCED FROM INSTAGRAM.COM/CLOWNDOCTORSAUS

In the long and largely joyless genre of Things That Happen in Hospitals, the arrival of a Clown Doctor is — statistically, emotionally, and by almost any other measure — one of the better ones.

HOSPITAL SERVICES

1 with, never at. They are, in short, doing something that looks effortless and is anything but. Children and young people can even swap roles, becoming the doctor themselves through medical play – which, for a young person accustomed to being the patient, and the one being assessed, is not a small thing. And for parents wondering whether their child is too old to benefit – the research suggests probably not. A study at an adolescent inpatient psychiatric unit in Victoria found that 95% of teenagers aged 13 to 18 reported having fun during Clown Doctor visits, with 96% of clinical staff believing the visits were beneficial. Turns out silliness doesn’t have an age limit.

The science, briefly There is, it turns out, a growing body of research on laughter that makes it sound considerably less frivolous than its reputation suggests. Studies have shown that humour lowers blood pressure, releases endorphins, improves circulation, stimulates the nervous system, and strengthens immune function. More practically: in every single case reviewed in one Australian study, paediatricians reported that Clown Doctors increased children’s willingness to cooperate with their medical assessment. Which is – if you’ve ever tried to get a resistant young person through a blood draw – not nothing. One parent, whose words appear on the Clown Doctors Australia website, put it in terms that will resonate: “My daughter’s experience with the Clown Doctors has transformed her entire healthcare journey and consequently our stress and health as a family.”

2 3 4 5

5 Things you might not know about clown doctors THEY AREN’T VOLUNTEERS Clown Doctors are professional performers with specialised training. Many come from backgrounds in theatre, music, improvisation and physical comedy, and receive additional training to work safely and effectively in hospital environments.

THEY WORK ALONGSIDE MEDICAL STAFF Clown Doctors aren’t there to distract from healthcare. They’re part of the broader care experience, often working with doctors, nurses and allied health teams to help reduce anxiety and make procedures less overwhelming for children.

EVERY INTERACTION IS DIFFERENT Some children love big laughs and silly songs. Others prefer a quiet joke, a puppet, or simply someone sitting beside them. Clown Doctors tailor their approach to each child, always taking their cues from the child and family.

THEY’RE BACKED BY RESEARCH Studies from around the world have found that hospital clown programs can help reduce anxiety and distress in children before medical procedures and during hospital stays. Researchers have also noted benefits for parents and healthcare staff.

THEY DON’T JUST HELP CHILDREN Parents, siblings and hospital staff often find themselves caught up in the fun too. A moment of laughter can break the tension in a room, offering a brief but welcome reset during what may be a very difficult day.

DID YOU KNOW?

Clown Doctors visit children’s hospitals and healthcare settings across Australia, bringing moments of play, connection and joy to more than 300,000 children, family members and healthcare workers each year.

The practical part Clown Doctors currently work across 22 hospitals and two hospices in Australia, and the program has expanded to include one disability hub. The whole enterprise runs on donations – no government funding, no hospital budget – which means it exists because people decide it should. If you’d like to know whether your hospital is on the list, the Clown Doctors Australia website has the details. And if

they do appear at your young person’s bedside: they will always ask first, always adapt to the mood in the room, and always – gracefully, professionally – make themselves scarce if it’s not the right moment. Which, when you think about it, is a skill many of us are still working on. ----Find out more at clowndoctorsaustralia.org.au I SSU E 48 | S P R I N G 2026 11

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Supertee Supertee turns medical wear into something a little more magical,

Courageous Kids app

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Hos pital HEL PER S When children spend time in hospital, the little things can make a big difference. These products and resources help bring comfort and a sense of control to days that can feel overwhelming.

My Med Pouch Gracie the Get Well Soon Fairy

If you find yourself leaving hospital with a bundle of medication this is the product

Part of the Helper Fairies and Friends

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range - Gracie the Get Well Soon Fairy

a compact, insulated carry

knows it’s no fun when you don’t feel

bag designed to keep kids’

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by your side, and help you rest and feel

easy to access — at home,

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out and about, or while

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14 SO U RCEKI DS .CO M . AU

PRODUCTS

Buzzy Bee for procedures Needles and medical procedures can be a big source of worry for children. Buzzy Bee is a small, child-friendly device that combines gentle vibration and cooling to help reduce discomfort and provide a distraction during procedures such as injections, blood tests and IV insertions. Its fun bee design helps transform a potentially scary experience into something more manageable, giving children another tool to feel more comfortable and confident during medical care. RRP: $120 paedseducation.com.au

Blended by Sarah For children who are tube fed, mealtimes can look a little different, but that doesn’t mean food has to lose its connection to flavour, choice and family life. Blended by Sarah creates wholefood blends made specifically for the tube-fed community,

Brave Border Collie

using ingredients such as fruits,

Brave is a weighted emotional support soft

vegetables and proteins in

animal (ESSA) designed to provide comfort and

smooth, ready-to-use pouches.

companionship for children. Inspired by the Little

During hospital stays, these

Paws picture book Brave The ESSA, this beautifully

blends can provide a familiar,

detailed Border Collie has a soft, weighted body that

nourishing option while helping

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children maintain a sense of

to take along for procedures, appointments or quiet

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when things feel unfamiliar. RRP: $55 | littlepawsplushies.com

My Buddy Boo My Buddy Boo is a therapeutic comfort toy designed to help children understand medical experiences, express emotions and feel less alone. With removable emotion badges and medical accessories including an IV drip, port, insulin pump and asthma pump, Boo helps children explore their own experiences through play and conversation. RRP: from $80 | mybuddyboo.com.au

Choiceworks from Bee Visual Hospital stays can bring lots of new faces, changes and unknowns. Bee Visual’s Choiceworks apps understand their day, prepare for what’s coming

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use pictures and visual schedules to help children

I SSU E 48 | S P R I N G 2026 15

Practical tips for autism families

NAVIGATING HEALTHCARE SYSTEMS

he Australian healthcare system can feel like it wasn’t built for your family. Long waits, sensory chaos, clinicians who don’t quite get it. And that’s all before you’ve even explained why you’re there. But there are things you can do that make a real difference. Autism Association Australia spoke with Dr James Best, award-winning GP, child development specialist, and father of an autistic son, and Kathrine Peereboom, mother to three profoundly autistic sons and national disability advocate. Between decades of professional expertise and hardwon lived experience, here’s what they want autism families to know.

BUILD YOUR FAMILY’S MEDICAL PROFILE Before the next appointment, the next 16 SO U RCEKI DS .CO M . AU

procedure, or the next unexpected trip to Emergency, build a concise medical profile for your autistic loved one. Think of it as a document you can hand to any clinician, anywhere, that does the talking for you when you’re already stretched thin. Keep it brief and cover the essentials: • Diagnosis and any co-occurring conditions • Current medications • Top three things clinicians must understand about your loved one • Behaviour triggers and early warning signs • De-escalation strategies that work • Sensory sensitivities Bullet points over paragraphs. One page is better than five. If your GP can add a summary to your loved one’s My Health Record, even better. In an emergency, you can simply tell the

nurse or doctor, “My GP has put something there, please take a look.” Remember to update your document, or get the GP to update My Health Record regularly. When the moment comes, you won’t have the headspace to remember everything. This profile does it for you. “I create what I call a ‘bible’ - a profile on each of my children that I update on a regular basis. When you do have a situation that could be an emergency, you don’t want to be focusing at that time on ‘what do I have to remember?’ So if you’ve already done it, you can just bring it to the appointment.” - Kathrine Peereboom

KNOW WHAT TO EXPECT FROM YOUR GP AND WHAT TO ASK FOR Respect is non-negotiable. If your GP isn’t treating you and your loved one with respect, find one who will. The right GP works with you, not just around the illness or the immediate concern. That means longer appointments when needed, flexible waiting arrangements, and genuinely engaging with your autistic family member even when they’re not making eye contact or responding verbally. Dr Best is direct with other clinicians on this, “...if a patient is interacting with you less because of their

I N A S S O C I AT I O N W I T H

RED FLAGS YOU SHOULD NEVER IGNORE

autism, you should be trying to interact with them more.” When you find a GP who gets it, use the relationship fully. Book a “well visit” to help your loved one become more familiar with the environment, the equipment, and the person. It can make a real difference when situations are urgent, or when they’re in pain and overwhelmed.

EMERGENCY DEPARTMENTS PREPARE FOR THE REALITY Emergency Departments are the most sensory-intensive environment in the healthcare system. Long waits are the norm, staff are under enormous pressure, and even good clinicians can lose sight of the fact that a six-hour wait can be more difficult for an autistic person. So, go in with a plan: • Bring your medical profile (laminated if you can) • Have a short, calm script ready. For example, “I know everyone’s waiting, but if my child has to wait, things will escalate, and that’s not anyone’s fault. Can we talk about options?” • P repare yourself emotionally. It may not go the way it should. Staying calm helps, especially as your loved one will be attuned to your distress. • K now your options. A telehealth service or GP home visit may be the right call for non-emergency situations.

You are the expert on your loved one. Watch for language that dismisses or diminishes. If a clinician frames your family member as a problem, a burden, or an inconvenience, call it out. Dr Best recommends staying calm, being assertive, and saying it plainly, “It’s not their fault they’re responding this way. Can you please treat them with respect?” You don’t have to accept disrespect to get the care you came for. If speaking up feels impossible because of your own disability, language barriers, or because you’re already running on empty, lean on your network. A support worker, coordinator, or trusted advocate can be your voice when you need one.

What to say when you see red flags from a doctor or allied health professional? Save these phrases in the notes section on your phone, so you have the words to advocate for yourself or your loved one. It’s not his/her/their fault they’re behaving this way, it’s because of their individual needs. Can you please treat them with respect? I understand everyone has to wait, but if my child waits this long, things will escalate beyond their control. It’s not misbehaviour. Can we work out a plan? e are the experts on our loved one. W Can we talk about their specific needs before we begin? This environment is very distressing. Is there somewhere quieter we can wait? I have a medical summary here that explains their diagnosis, triggers and needs. Can you please take a moment to read it?

COMPLEX CARE AND DENTAL - COORDINATE EVERYTHING YOU CAN For families in the profound autism cohort, even a routine dental clean can require a general anaesthetic. If that’s your reality, use every moment of access. When your loved one is already under

a general anaesthetic, coordinate with all relevant clinicians (GP, paediatrician, dietitian, etc) to get as much done safely as possible at once. It’s not ideal, but it’s practical. At Westmead Hospital, NSW, OneStop Shop clinic delivers complex care coordination for eligible adults. The Primary Health Networks program is also worth exploring, regardless of your state. Unfortunately, the system is still siloed. A good GP who acts as a genuine coordinator, connecting the dots between specialists, hospitals, and allied health, can make a real difference.

ONE LAST THING There is genuine progress happening in the healthcare system. Quiet rooms in medical centres, better awareness in emergency departments, and the passionate, caring clinicians who’ve been trained to do better. Change is happening! But progress doesn’t mean you can wait for the system to catch up to your family. In the meantime, build your medical profile. Find your network. And use your voice, because you know your loved one in ways that no clinician ever will. Take that into every room with you. “You know your loved one best. Find your voice, and if you’re not confident in that, write the email. Find somebody else in your network that can speak for you.” – Kathrine Peereboom

You can watch the full webinar chat between Kathrine and James here – youtube.com/watch?v=vcpn4Wucbdc and visit autismaustralia.org.au to learn more about how they support autistic people and their families across Australia. Autism Association of Australia has been a trusted, independent source of information for autism families for 18 years. Learn more at autismaustralia.org.au I SSU E 48 | S P R I N G 2026 17

Ask a PLAN

MANAGER! What do the latest NDIS reforms mean for families?

THE SHORT VERSION For most families nothing changes right now – your child’s current NDIS Plan stays in place and the changes roll out in stages between now and 2030 Several rules are changing over the next few years, including how reassessments work, how some funding is allocated and how plan managers are chosen Thriving Kids is starting, but children already on the NDIS will not automatically leave the scheme The most useful thing you can do is use your child’s funding, keep good records and start gathering evidence if a major life change is coming up. The new NDIS laws passed in August 2026 and the changes will be introduced in stages between now and 2030. With so much happening across several years, it can be hard to know what matters for your family now and what can wait. The most important thing to know is that the changes are not happening all at once. For most families there is nothing you need to do right now – there is time to understand each change before it affects your child or young person.

Leap in! plan manager Minell answers some common questions about what is changing, when it may happen and what families can do to prepare.

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I N A S S O C I AT I O N W I T H

KEY DATES FOR FAMILIES 27 AUG 2026

APR 2027

Funding reset begins for some support types and Thriving Kids starts its phased rollout

JAN 2028

FEB 2027

OCT 2026 New rules for unscheduled plan reassessments

Unspent funds no longer carry over into a renewed plan

New framework planning expected to begin, starting with a small number of people on the NDIS

Is my child’s NDIS Plan changing now?

The most important thing to know is that the changes are not happening all at once.

OCT 2027

For most families, no – you can keep using your child’s funding and supports as usual. Over time, some of the rules the NDIA uses to make decisions about access, reassessments, plans and funding will change. Because these changes have different start dates, families will not all experience them at the same time.

What is changing with plan reassessments? Unscheduled reassessments are now only for significant, ongoing changes. Only participants, their nominee or guardian can request one. From 27 August 2026, the rules for unscheduled plan reassessments have changed. An unscheduled reassessment is when the NDIA looks at a plan before its usual reassessment date because something important has changed. It is now generally only available when there has been a significant and ongoing change in your child or young person’s needs or circumstances. This could include: • Finishing school • Starting work • Moving out of home • A major change in the support available from family or carers. The change may be expected or unexpected. The NDIA has 90 days to decide on your request. If you are not satisfied with its decision, or the 90 days pass without one, you can ask for a review.

Families with plan management choose a plan manager from a governmentapproved panel

New NDIS access rules begin

END OF 2030

The move to framework planning is expected to be complete.

What you can do If a big life change is on the horizon – finishing school, starting work, moving out of home – start gathering evidence now. Recent reports from healthcare or allied health professionals, along with your own notes about your child’s changing needs, put you in a strong position if you need to request a reassessment.

What is changing with social and community participation funding? From October 2026, some plan allocations are being reduced, but the government has said critical supports like personal care and Specialist Disability Accommodation are not intended to be affected. From October 2026, the government will reduce the funding allocated in plans for two types of support. Social, Civic and Community Participation allocations will be reduced by 50%. Capacity Building daily activity allocations will be reduced by 10%. This applies to the amount allocated in a plan, so the effect will vary depending on how much of that funding your child currently uses. The change is being introduced gradually as plans are reassessed or renewed over 12 months, and it does not affect every part of your child’s NDIS Plan.

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I N A S S O C I AT I O N W I T H

If your child is already on the NDIS, they will not automatically leave the scheme when Thriving Kids begins. The government has said the changes are not intended to affect critical supports, including: • In-home personal care • Community nursing • Home and vehicle modifications • Personal mobility equipment • Specialist Disability Accommodation.

Will families be expected to provide more support themselves? No, the new rules do not add a new expectation on families. They describe more clearly how support from family and carers has always been considered and the NDIA still has to weigh the impact on you. Informal support, the help provided by family, friends and carers, has always been part of how the NDIA decides what to fund. The new rules describe this more clearly rather than changing it.

What is Thriving Kids, and will my child leave the NDIS? If your child is already on the NDIS, they will not automatically leave the scheme when Thriving Kids begins. Thriving Kids is a new early intervention and foundational supports program for children aged eight and under who have developmental delay or are autistic and who have low to moderate support needs. It begins its phased rollout from October 2026 and is expected to be available nationally by January 2028. Under the transition arrangements, children aged eight and under who joined the NDIS before 1 January 2028 will continue to have their eligibility considered under the previous access rules. Children with higher support needs are expected to continue receiving support through the NDIS. There is still more to come about Thriving Kids, including how families will access supports and how children may

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move between foundational supports and the NDIS.

What are the new NDIS Plans I keep hearing about? From April 2027 the NDIS is expected to start ‘framework planning’, but only for a small number of participants at first and children under 18 are not expected to be in the initial rollout. Instead of the current budget categories, a plan budget will be informed by an assessment of a person’s support needs, such as their disability support needs, how they manage everyday activities and their stage of life. The detail of how framework planning will work is still being finalised. Your child or young person’s existing NDIS Plan will stay in place until it is their turn to move across and the NDIA will contact you before this happens.

What else should families know? A few more changes are coming over the next several years, none of them need action from you right now. From February 2027, unspent funds will not carry over into a renewed plan. This is different from funding periods within a plan. If your child’s plan has funding periods, unused funding can still carry forward from one period to the next. Provider registration is also changing over time, particularly for higher-risk supports, though families will still be able to choose unregistered providers for some lower-risk supports.

IT’S OKAY TO USE YOUR CHILD’S FUNDING

Plan management is changing too. From October 2027, families with plan management will choose a plan manager from a government-approved panel. There will be a six-month transition and no need to act before then. Two protections are also worth knowing about: • You can ask for a decision about your child’s plan to be reviewed, including where an automated system has helped make it • If the NDIA is considering removing someone from the NDIS, it must make five attempts to contact them first, including at least one in writing, over at least three months.

How to prepare with confidence. For most families, day-to-day life on the NDIS does not change right now and you have time to prepare well. You can: • Keep using your child or young person’s NDIS Plan and supports as usual • Keep clear records of their current needs and supports • Note any important changes in their daily life or circumstances • Start gathering evidence early if a major life transition is coming up • Keep an eye on the Leap in! NDIS Changes page as more detail is confirmed. What matters most is knowing when a change is likely to affect your child or young person and what to do next. ----Leap in! supports families across Australia to understand and manage their young person’s NDIS Plan. If you’re looking for a plan manager, call us on 1300 05 78 78 or email crew@leapin.com.au.

Your child’s NDIS funding is there to be used for the supports they need. Using the plan well and getting the supports that help your child or young person is the best outcome for them. If you are ever unsure whether something is covered, or how to use part of the plan, ask us. Helping you understand and use the plan is exactly what we are here for. You can call Leap in! on 1300 05 78 78.

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Helping your child cope with

Medical Anxiety When your child has a disability or chronic condition, medical appointments aren’t the occasional disruption to normal life – they are normal life. Blood tests, specialist reviews, hospital stays, therapy sessions… rinse and repeat… and somewhere along the way your child’s anxiety over it all can build and build.

n fact, research shows that children with chronic medical conditions face a significantly higher risk of developing anxiety disorders than their peers – with somewhere between 20% and 50% developing one. Thankfully, there are evidence-based strategies that actually work to help your child cope. They may not be miracle cures but it’s worthwhile having some practical tools you can use to help your child feel more in control and less overwhelmed.

WHY MEDICAL ANXIETY BUILDS UP Pre-procedural anxiety in children stems from multiple factors: caregiver anxiety, temperament, age, previous medical encounters, fear of separation from 22 SO U RCEKI DS .CO M . AU

parents, unfamiliar environments, loss of control, and coping with unfamiliar routines and instruments. For children who see medical professionals regularly, it’s not just about one scary appointment – it’s the cumulative effect. Each negative experience can make the next one harder. Children with negative procedural experiences have an increased risk of fear and distress, with psychological consequences for subsequent procedures and future healthcare behaviours. The hard bit is that your own anxiety feeds into theirs. When you’re worried (and who wouldn’t be?), your child picks up on it. They’re tuned into your emotional state, especially in unfamiliar or potentially threatening situations.

EVIDENCE-BASED STRATEGIES TO HELP PLAIN SPEAKING When children receive education about what happens in a hospital, who works there, what procedures are performed, and what to expect before entering, their anxiety levels decrease. It’s important to note that effective preparation isn’t about making everything sound fun or pretending it won’t be uncomfortable. It’s about honest information delivered in an ageappropriate way. What this looks like in practice: • E xplain what will happen, step by step. “The nurse will clean your arm with a cold wipe, then you’ll feel a sharp pinch.” • Don’t promise it won’t hurt if it might. Instead: “It will be uncomfortable for a moment, but it will be over quickly.” • For younger children, use a teddy or doll to demonstrate what will happen. • For older children, show them pictures or videos of the procedure if available. • V isit the location beforehand if possible, so the environment itself isn’t a surprise.

MEDICAL

YOUR ROLE AS COACH, NOT RESCUER You can be a coach for your child, teaching anxiety management strategies. This gives you a role in your child’s positive functioning, which can reduce your own anxiety and increase your support of your child – and both of these can help reduce your child’s anxiety too.

DISTRACTION TECHNIQUES THAT ENGAGE THE BRAIN This isn’t about simply handing your child an iPad and hoping for the best (though sometimes you do what you’ve got to do!). Research supports distraction through imagery, play, games, toys, and music as powerful strategies for children facing medical procedures. The research distinguishes between two types: Active distraction – where your child is doing something: •B lowing bubbles (the deep breathing helps too) •P laying a game on a device •C ounting or “I spy” games • Controlled breathing exercises (“blow out the birthday candles”)

• V irtual reality headsets (increasingly available in hospitals) Passive distraction – where your child is watching or listening: • Watching videos or cartoons • L istening to music or audiobooks • B eing read a story Studies show that both visual and auditory distraction techniques are effective methods for reducing invasive procedurerelated pain, anxiety, and medical fear in children. Which works better depends on your child – some need active engagement, others do better with something calming to watch. The key: Choose something your child already likes and finds engaging. This isn’t the time to introduce a new game they’re not sure about.

Instead, try coaching language: “ I know this is hard. Let’s do our breathing together.” “ You’re doing brilliantly. Just a bit longer.” “Remember our plan? Let’s use it now.” “I’m right here with you.”

This acknowledges the difficulty whilst reinforcing that they can cope with it.

POSITIONING FOR COMFORT When possible, avoid having your child lie flat or restrained – it increases the feeling of losing control. Can they sit upright? Can they sit on your lap? Can they hold their own arm out rather than having it held down? Obviously, this depends on the procedure, but it’s worth asking: “What position would work best for you?” Sometimes medical staff default to what’s easiest for them, not what’s best for the child. A respectful conversation about positioning can make a real difference. I SSU E 48 | S P R I N G 2026 23

MEDICAL

BUILDING A “COPING TOOLKIT” Work with your child between appointments to develop their own strategies. This might include: • A special toy or comfort item they bring to appointments • A playlist of calming or favourite songs • Specific breathing techniques you’ve practised together • I magery they find calming (imagining their favourite place, for example) • A reward system (not bribery before the procedure, but acknowledgement after) THE CRUCIAL BIT: practise these strategies when your child isn’t anxious. If you only use deep breathing during needle procedures, it could become a trigger rather than a tool.

WHEN TO GET ADDITIONAL SUPPORT Sometimes, despite your best efforts, the anxiety becomes overwhelming. These are some signs that professional support might help: • Your child is refusing necessary medical care • A nxiety about appointments is affecting daily life (trouble sleeping, eating, concentrating at school) • Your child is developing phobic

responses (extreme fear out of proportion to the situation) • T he anxiety is getting worse over time rather than better For clinically significant anxiety disorders, targeted psychological interventions such as cognitive-behavioural therapy are indicated. This isn’t about your child being “weak” or you being inadequate – it’s about accessing the right level of support for what they’re dealing with.

THE LONG GAME

If your child has ongoing medical needs, you’re probably not going to eliminate medical anxiety entirely. The goal isn’t to make them love hospital visits (that would be weird). The goal is to give them tools to cope, to help them feel some sense of control, and to prevent anxiety from becoming so overwhelming that it interferes with getting the care they need.

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MEDICAL

The family support services, play spaces, therapy teams and quiet corners helping make repeat hospital stays a little easier for Australian families.

arge children’s hospitals often have an entire layer of support services sitting behind the medical care. Child Life therapists. Music therapy, sensory spaces, sibling support. Bedside entertainment. School programs. Family lounges, social workers who can help to relieve the pressure when you’ve hit the wall. We’ve pulled together some of the supports available at some of the major Australian children’s hospitals that can make long admissions, repeat appointments and chronic care a little more manageable.

VICTORIA Royal Children’s Hospital Melbourne

Beyond the ward:

A GUIDE TO HOSPITAL SERVICES 2 6 SO U RCEKI DS .CO M . AU

The Royal Children’s Hospital has one of the best-known Child Life Therapy programs in the country. Child Life Therapists help children prepare for scans, surgery, blood tests and procedures using play, distraction techniques and ageappropriate explanations. It sounds simple, but for many kids it can dramatically reduce distress and fear. Then there's the hospital’s Be Positive (B+) video which was designed specifically to help children understand what happens in hospital. Instead of medical jargon and fluorescent terror, it explains procedures, wards and equipment in a way children can actually process. Amongst other services, families can also access: • t herapeutic and medical play programs • preparation support before procedures • d istraction support during painful procedures • music therapy programs For the grown-ups: there’s a Meditation Garden and Prayer Area with a peaceful outdoor terrace. When you’ve been on a ward for three days straight and need ten minutes where you’re not “on”, this is where you go. It’s quiet. You can see

SERVICES MANY PARENTS DON’T REALISE THEY CAN ASK FOR A lot of families assume support services are only offered if staff bring them up first. In reality, some services require referrals, and parents often need to ask directly. Depending on the hospital, you may be able to request:

HAPPY GARDEN - RANDWICK CHILDREN'S HOSPITAL

actual sky. The hospital also has the Wadja Aboriginal Family Place, a dedicated space for Aboriginal and Torres Strait Islander families. And then there’s the stuff kids love: a two-storey coral reef aquarium, a meerkat enclosure (looked after by Melbourne Zoo staff – yes, really), a cinema, and secure outdoor playgrounds.

HAPPY GARDEN - IMAGE SOURCED FROM OUTHOUSEDESIGN.COM.AU

NEW SOUTH WALES Sydney Children’s Hospitals Sydney has two major children’s hospitals – Randwick and Westmead – and both have strong Child Life and Music Therapy departments. Music therapists use singing, instrument playing, and music listening to help kids feel more comfortable and normalise hospital. They create individualised programmes for coping with pain and anxiety. Child Life Therapists do procedural preparation, including photographs of other kids going through similar treatments, distraction techniques, and therapeutic play. At Randwick, there’s the Happy Garden on a balcony that’s properly designed – gazebo with see-through roof, butterfly seats, fairy lights in the tree, murals. The redevelopment also includes a whalethemed playground with climbing features, slides, hanging structures, sensory features and quiet areas. The space is designed so kids in hospital beds and wheelchairs can access and enjoy the space.

QUEENSLAND Queensland Children’s Hospital Queensland Children’s Hospital has built a layered approach to keeping kids and families connected, distracted and supported through long admissions. At the centre is the Starlight Express Room, run in partnership with the Starlight Children’s Foundation. Located on Level 6, it’s a dedicated play and activity space where children can step away from the ward for games, crafts, music, group activities and time with Captain Starlight and volunteers. It’s designed as a proper break from the clinical rhythm of hospital life rather than an add-on to it. Alongside this is Radio Lollipop, the hospital’s in-house radio station. Children can request songs, send messages to friends or family, take part in competitions and tune into live broadcasts from across the hospital. It’s accessible both through bedside systems and on-air segments, giving children who can’t leave their rooms a way to still feel part of what’s happening beyond their bed. Together with bedside entertainment systems, volunteer visitors and ward-based activities, these programs create a kind of informal network of distraction and connection: somewhere to go, something to join in with, and something to reach for when staying in bed is the only option.

• Child Life Therapy • Music Therapy • Social work support • Psychology support • Feeding support • Sensory accommodations • Communication aids or visual supports • School liaison services • Sibling support • Pastoral care, including non-religious support • Interpreter services • Accommodation assistance • Meal vouchers or emergency financial assistance • Pain management teams • Mock MRI preparation sessions • Procedural distraction support.

WESTERN AUSTRALIA Perth Children’s Hospital Perth Children’s Hospital was deliberately designed to feel less like a hospital and more like Kings Park and the Botanic Garden next door. There’s a Northern Winter Garden, natural light, organic shapes, bright colours. Staff stations in inpatient areas are designed as treehouses. Seating areas are for climbing and exploring. It sounds like decoration until you realise you’re spending days in a building that doesn’t feel institutional. There’s a hydrotherapy pool, auditorium, cinema, recreation facilities including Starlight Foundation spaces. Indoor and outdoor play areas. I SSU E 48 | S P R I N G 2026 27

MEDICAL

WHAT TO PACK FOR LONG ADMISSIONS Small things that make hospital stays feel less like you’re living inside a machine that never switches off.

Comfort anchors

SUPPORTS FOR TEENS Teens in hospital often want the same thing most teenagers want: privacy, autonomy, decent Wi-Fi and to not be treated like they’re six.

LIVEWIRE AND TEEN SPACES Many major children’s hospitals have teenspecific programs through the Starlight Foundation’s Livewire platform, including gaming, creative sessions, online hangouts and events designed specifically for adolescents rather than little kids. Which is an important distinction – a sixteen-yearold sitting beside a bead maze and a Paw Patrol mural can feel emotionally stranded pretty quickly.

YOUTH WORKERS AND ADOLESCENT HEALTH TEAMS Some hospitals have youth-focused staff whose entire role is helping teenagers navigate hospital life, identity, independence and mental health during treatment. That can include support around: • anxiety • body image changes • isolation from peers • schooling disruptions • loss of independence • t ransitioning to adult healthcare systems 2 8 SO U RCEKI DS .CO M . AU

HOSPITAL SCHOOLING AND EDUCATION SUPPORT Long admissions can leave teens stressed about falling behind socially and academically. Hospital education programs may help with: • school liaison • a ssignment coordination • exam support • t ransition planning • maintaining routine and connection Even just keeping one thread connected to ordinary teenage life can help hospital stop feeling like an entirely separate universe with worse lighting.

CREATIVE THERAPIES Music therapy, art therapy and creative programs can be good for teens because they offer expression without forcing conversation. Some hospitals run: • songwriting sessions • d igital media projects • journalling • a rt groups • bedside music therapy A lot of teenagers would rather communicate through a playlist than a feelings worksheet, frankly!

TEEN-APPROVED HOSPITAL ESSENTIALS • long phone charger • noise-cancelling headphones • oversized hoodie • gaming console/Switch • safe foods • LED lights or sensory items

Favourite blanket or pillow, hoodie or soft layer from home, comfort object or fidget item, sleep mask, lip balm. Anything that makes the bed feel less borrowed.

Tech and entertainment Phone or tablet with downloads, long charging cable (the 2–3 metre kind), headphones, gaming device if relevant, shows/books already loaded. Hospital Wi-Fi is not your friend when you actually need it.

Sensory supports Ear defenders or noisecancelling headphones, sunglasses for harsh lighting, stims or fidgets, chewy or tactile items, anything your child already uses to regulate at home.

Practical bits for parents Snacks you can eat onehanded, water bottle, spare clothes, toiletries, phone charger + backup battery, change for parking/vending, ziplock bags for the inevitable “important mystery item”.

Paperwork (unglamourous but important!) Medication list, care plan or discharge summaries if you have them, Medicare/NDIS details, key contacts, allergy info. Ideally in one place you can grab without thinking.

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The Road to NAPA From Singapore and LA to Lane Cove, how one family’s journey to help their daughter brought a new approach to therapy to Australia.

or Louise Conn, the story of NAPA Centre in Australia begins nearly 20 years ago with the birth of her daughter, Georgia. Following Georgia’s traumatic birth and hypoxic brain injury, Louise and her husband Mick were given a grim picture of their daughter’s future. Her condition was described as “catastrophic”, and they were told Georgia would not walk or talk, and may not survive early childhood. “This was my seven-day-old baby,” Louise says, remembering those early conversations. “I was hearing things I just couldn’t process.” At the time, the family was living in Singapore. Louise had been working as a graphic designer, Mick in banking. Neither had experience with disability, and suddenly they were trying to navigate what Louise describes as a complex and highly medicalised system, making decisions they didn’t yet understand. Specialists, medical procedures, investigations, tests, and more questions than answers defined Georgia’s early days. Then, through a chance connection, the family met a paediatric physiotherapist who approached Georgia differently. There was still therapy, still clinical intent, but it was layered with warmth, play, and connection.

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“Up until then, everything had felt very medical,” Louise says. “And then suddenly there was someone who just picked Georgia up, cuddled her, and said, ‘Let’s play!’” It was a small but significant moment, and it shifted Louise’s perspective, reframing what therapy could look and feel like for both child and parent.

“a big tin shed at the end of LAX airport.” But that uncertainty didn’t last long. “There was a sense that everyone was working towards the same thing,” she says. Instead of separate appointments and disconnected goals, therapists worked together, building a shared plan around Georgia.

DISCOVERING NAPA

WHAT MAKES NAPA DIFFERENT

It was through other families that Louise first heard about a small therapy collective in Los Angeles, California: NAPA Centre. At that stage, NAPA, which stands for Neurological and Physical Abilitation, was still developing. Louise remembers arriving and wondering whether they had made the right decision, describing it as

NAPA’s model is built around intensive, individualised therapy. Rather than seeing a physiotherapist, occupational therapist, or speech therapist separately, children work with a coordinated team, with all disciplines collaborating around shared goals. Programs are tailored to each child,

OUR STORY

and the program is designed around what BRINGING that particular child needs to work on, NAPA TO whether that’s mobility, communication, AUSTRALIA feeding, or a combination of all three. As the Conn family returned to NAPA A key part of the model is intensity. again and again, Louise began to see NAPA is best known for its intensive both the impact of the model and the therapy blocks, which typically run over gap it revealed. Families were travelling several weeks, with children attending long distances to access therapy, often at daily sessions that can last for multiple significant cost, because there was nothing hours. The approach is based on repetition comparable closer to home. and consistency, giving children the While in Singapore, she began opportunity to practise hosting informal intensive skills frequently and programs, bringing “Parents have build on them over therapists over and running to be equal in a concentrated period what became known as this,” she says. of time. “pop-ups”, where families But just as important “You can’t design could come together to as the structure is how access the same model of therapy around the therapy is delivered. care she had found overseas. a child without Sessions are designed to Over time, those pop-ups understanding be engaging and playful, extended to Australia, even when the work itself is where demand quickly their family.” physically and cognitively became clear. demanding. For Louise, that balance “We knew we couldn’t keep doing this between challenge and enjoyment was one as a temporary solution,” Louise says. of the things that stood out early on for “Families needed something consistent.” Georgia. “It didn’t feel like therapy in the Having moved back to Australia by traditional sense,” she says. “There was then, Louise and her family became still hard work, but it was wrapped co-owners of NAPA Australia in 2015. in play.” A year later, the first permanent

Australian clinic opened in Lane Cove, on Sydney’s lower North Shore. It was not a straightforward process. The model was still relatively unknown in Australia, and the team was building something that didn’t yet have an established place in the system. Early clinicians took a leap of faith, joining a service that was still taking shape, while pop-up programs continued to run alongside the development of a permanent base. What they were building was not just a clinic, but a different way of delivering therapy. One that brought disciplines together, worked intensively, and placed families at the centre of the process.

FROM PARENT TO FOUNDER Today, Louise is Director of Client Services at NAPA Centre Australia, working at the intersection of families and clinicians and helping shape how therapy is delivered across the organisation. Her role is grounded in lived experience, and reflects years spent navigating therapy systems as a parent, travelling internationally for care, and learning what works in practice. A core part of her approach is partnership. “Parents have to be equal in this,” she says. “You can’t design therapy around a child without understanding their family.”

WHO NAPA IS FOR NAPA now has locations in Sydney, Melbourne, and Brisbane, and works with children and young people with a wide range of neurological and developmental conditions, including cerebral palsy, genetic conditions, developmental delay, and acquired brain injury. Many families come to NAPA after trying other therapy pathways, often looking for a more coordinated or intensive approach. I SSU E 48 | S P R I N G 2026 31

OUR STORY

That partnership is central to the model. At the end of an intensive block, therapists work with parents and caregivers to develop a home program, so that progress doesn’t stop when the sessions do. For Louise, this is where the model connects most strongly with her own experience. “You’re not handing your child over and stepping back,” she says. “You’re part of it. You’re learning alongside them.”

LIFE BEYOND NAPA Access looks different for every family. Some attend intensive programs a few times a year, while others combine intensives with ongoing weekly therapy. Programs are goal-based, and families are closely involved in setting those goals and understanding how to continue progress at home.

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Almost two decades on, Georgia’s diagnosis has not changed. But she is now 19, and the life built around that diagnosis looks very different from what Louise and Mick were first told to expect. Louise describes Georgia as strong, engaged, and full of personality; someone who loves music, chocolate ice cream, and

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being part of the world around her. It is a life shaped with intention, one that supports her needs while still making space for joy. Looking back, she is clear that the early prognosis did not define what was possible. “If I could go back to that version of myself,” Louise says, “I would tell her that things will be okay. There are so many moments of joy ahead… things you just can’t see at the beginning.” It’s a message she now shares with other parents walking through NAPA’s doors for the first time, often carrying the same fear and uncertainty she once felt. “You don’t have to have it all figured out,” she says. “You just have to start. And you don’t have to do it on your own.” ------By Katherine Granich

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Noonan Syndrome UNDERSTANDING THE BIGGER PICTURE

Noonan syndrome has been called “the most common rare disease you’ve never heard of”. Katherine Granich gives an overview of what parents need to know, from diagnosis to finding the right support.

y daughter received her diagnosis of Noonan syndrome when she was eight months old, and at the time, I felt a mixture of relief, questions, and uncertainty. Having a name for her condition was reassuring, but also opened the door to a long list of medical terms, appointments, and things I had never before considered. My daughter is now 10 years old, and a decade into her journey, the most important thing I’ve learned is that her

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diagnosis is not her identity – it’s just one Noonan syndrome is one of a group of part of understanding who she is, and what conditions collectively called RASopathies. she needs to live a good life. This means they all have similar symptoms Noonan syndrome is a rare genetic and are caused by changes in the same disorder that can affect many parts of the cell signalling pathway, the RAS/MAPK body, including the heart, growth, muscles, Pathway. When your child received their hearing, and vision. Some children also diagnosis, they may be told their “version” experience developmental, learning, of the disease. The most common, which speech, or behavioural affects around 50% of cases, is differences. The extent of Noonan syndrome PTPN11. SOS1 is responsible these features varies extremely is a rare genetic for 10-13% of cases, RAF1 is widely, and some people are responsible for around 5% of disorder that only mildly affected – you can cases, RIT1 is responsible for can affect many around 5% of cases, KRAS even have Noonan syndrome parts of the body, is responsible for less than and not realise you have it. including the Many parents don’t know 5% of cases, and a further heart, growth, that they themselves have 15-20% of Noonan syndrome Noonan syndrome until they muscles, hearing, cases are currently genetically have a child who is diagnosed, undiagnosed. There are other and vision. but it’s not always inherited. rarer versions which make up A significant number of people with the the remainder of cases. condition have what is known as a de Noonan syndrome has been called novo mutation, which means it arose “the most common rare disease you’ve spontaneously and was not inherited from never heard of” – and for good reason. It either parent. affects between 1 in 1,000 and 1 in 2,500

DIAGNOSIS

development, alongside other checks depending on their individual needs. A coordinated approach is important because this diagnosis can affect different areas of a child’s health at different stages of life. As a parent, you’ll become an expert in your child’s condition, and you may find yourself in the position of needing to educate their specialists because at times you’ll know more than they do – and yes, this can be disconcerting. Try to remember that the professionals caring for your child are your partners, and that your goal is the same: To give your child the best life possible.

WHAT ABOUT DEVELOPMENT AND LEARNING?

people. In Australia, there are as many as 20,000 people with the diagnosis, but according to the Noonan Syndrome Awareness Association (noonansyndrome. com.au), 50% of these people are either undiagnosed or misdiagnosed.

WHAT DOES NOONAN SYNDROME LOOK LIKE? There is no definitive Noonan syndrome experience. Some children may have characteristic facial features, short stature, or a distinctive chest shape, while others may have features that are much less obvious. Heart conditions are common, and children may also experience feeding difficulties, low muscle tone, coordination difficulties, hearing or vision problems, or issues with blood clotting. For families, this can mean that care involves several different specialists, and a treatment plan that is rarely straightforward. Following diagnosis, children may have assessments of their heart, hearing, vision, growth, and

Some children with Noonan syndrome experience developmental delay, particularly with speech and language or motor skills. Learning difficulties, attention difficulties, and behavioural or emotional challenges can also occur, although many children do not have intellectual disability. ADHD can be a common co-occurring condition with Noonan syndrome. This is where early intervention can make a real difference. Depending on your child’s needs, this might include speech-language therapy, feeding therapy, occupational therapy, physiotherapy, or other developmental services. The aim is not to make your child fit a particular idea of what is “normal”, but to give them the tools and support they need to

communicate, learn, participate, and develop independence – and eventually, to be able to advocate for themselves. For school-aged children, communication between families, healthcare professionals, and educators is particularly valuable. Your child might appear distracted, struggle with instructions, tire easily, or need more time to process information. Sharing relevant information about their strengths and challenges can help teachers understand the whole picture and develop strategies to support them.

LOOKING BEYOND THE DIAGNOSIS One of the challenges of raising a child with a rare genetic condition is that medical needs can sometimes dominate family life. There may be cardiology appointments, growth monitoring, surgeries, therapy sessions, and more, alongside the ordinary demands of school, friendships, and family life. Remember, your child is more than their diagnosis! Noonan syndrome doesn’t provide a blueprint for your child’s future. Instead, it gives families and professionals useful information about areas that may need monitoring or support. Treatment is individualised and focusses on managing the health or developmental issues that affect each person. Some children may require significant support, while others need relatively little intervention. By Katherine Granich

Finding your community A rare diagnosis like Noonan syndrome can feel isolating, but connecting with other families who understand the experience can be enormously valuable. In Australia, the Noonan Syndrome Awareness Association (noonansyndrome.com.au) provides information and resources for families, educators, and health professionals. Genetic Alliance Australia (geneticalliance.org.au) also provides information, peer support and connections for families living with rare genetic conditions. On social media, the Noonan Syndrome Support Group – Australia (facebook.com/groups/576253259074325) brings families together in an online community to share stories and support.

I SSU E 48 | S P R I N G 2026 35

Ready for the next chapter Moving out of home for the first time is a big deal

It’s a super exciting step – and with the right support it means more choice, more opportunities and more control over everyday life – all with support when you need it. Afford client Joanne moved out of her family home and into an Afford Supported Independent Living (SIL) property recently and she couldn’t be happier. “I love my home,” she says proudly. “I really love it.”

So, what exactly is SIL? SIL is an NDIS-funded support designed to help people live as independently as possible in their very own home. Support workers can assist with everyday activities such as cooking, cleaning, personal care, developing routines, managing medication, building skills and staying connected with the community. For Joanne, it’s the perfect mix of independence and support. She has support and care when she needs it and privacy when she doesn’t. She loves her kitchen, her garden, the gaming area, the pool and most of all,

3 6 SO U RCEKI DS .CO M . AU

“This is my home… and I love it” Afford client Joanne

her bedroom. Her room has its own ensuite bathroom and is decorated from floor to ceiling with unicorn-themed items. There’s linen, pillows, posters, miniatures, stuffed animals and more. This is not just somewhere she sleeps – it’s a space where Joanne is surrounded by her treasures and the things that truly matter to her.

What’s it like? This is what Afford SIL is all about. Your own bedroom, your own belongings and your own say in how your day looks – but with support available to help you work towards the things that matter to you. Maybe that means learning to cook your favourite meal, doing your own laundry, choosing what to have for

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Questions to ask before the big move What does my ideal home look like? Think location, housemates, bedroom, pets and hobbies. What support do I need – and what do I want to learn to do myself? Who would I like to live with? What does a typical day look like in this home? How are support workers matched and how much choice do I have? Is the provider registered to deliver SIL under the NDIS?

and talk to them about how they put your choices, rights and safety at the centre of their support.

Your home. Your next chapter.

dinner, building money management skills or heading out to see friends. It might mean discovering that you really enjoy having a quiet morning before everyone else gets up, or that you love having housemates to watch movies with. The aim isn’t for support workers to do everything for you. Good SIL support is about doing with you, helping you build skills, confidence and independence over time. For example, Joanne now knows how to cook. Also, living with other people can connect you to a whole new world. Joanne has formed deep friendships with her housemates. They enjoy activities together both at home and in the community and provide one another company and support.

Choosing the right support Of course, finding the right home is important. You should have a say in where you live, who supports you and what your support looks like. There is also an important new safeguard to be aware of. All providers delivering SIL must be registered with the NDIS Quality and Safeguards Commission. SIL providers must meet new SILspecific NDIS Practice Standards covering areas including supported decision-making, safeguarding, practice governance, and agreements about tenancy, housing and support arrangements. Afford is a fully registered provider. We recommend you ask any prospective provider whether they are registered to deliver SIL

There is no single right age or right way to move out of home. For some people, it’s a goal they’ve been working towards for years. For others, the idea grows slowly as they become more confident about what they want. The important thing is that the decision starts with you – your goals, your preferences and the kind of life you want to build and open the door to a bigger, more independent life – just like Joanne.

Afford has been offering disability services for 75 years. We are a fully registered provider. To learn more about Afford and the services we offer, visit Afford. com.au or call 1800 233 673.

I SSU E 48 | S P R I N G 2026 37

U nd er sta nd in g

SLOW PROCESSING

SPEED Y

ou ask your daughter to grab her shoes and jacket because you’re leaving in five minutes. Ten minutes later, she’s standing in the hallway with one shoe on, looking puzzled. Or your son reads the same paragraph three times and still can’t tell you what it said. The homework that should take twenty minutes stretches into an hour and a half, and everyone’s frustrated. If any of this sounds familiar, slow processing speed could be part of what’s going on.

WHAT ACTUALLY IS PROCESSING SPEED? Processing speed is the pace at which your brain takes in information, makes sense of it, and produces a response. Think of it in three stages: • Input – your brain receives information through your senses (you hear an instruction, see something written, feel a texture). • Processing – your brain interprets that information, connects it to what it already knows, and works out what to do with it. • Output – your brain sends a signal to respond: say something, write something, move. When processing speed is slow, the delay can happen at any point in that chain. Some people are slow to take in information in the first place. Some take it in fine but are slower to make sense of it. Others understand perfectly well but are slow to produce the response 3 8 SO U RCEKI DS .CO M . AU

– getting the words out, starting the movement, writing it down. This is why slow processing speed doesn’t always look the same. One child might seem to “zone out” when you’re talking to them. Another processes fine but freezes when asked to respond out loud. Another understands everything but can’t get their thoughts onto paper fast enough. It also explains why performance can seem inconsistent. Give a child enough time, in a quiet environment, with no pressure – and they might do something brilliantly. Rush them, add noise, add stress – and the same task falls apart. The ability is there. The processing conditions just have to be right. There are actually different types of processing speed, and they don’t always move together: • Visual processing speed – how quickly the brain makes sense of what the eyes see (letters, numbers, spatial layouts). • Auditory processing speed – how quickly the brain makes sense of what the ears hear (spoken instructions, classroom explanations). • Motor processing speed – how quickly the brain converts a thought into a physical action (writing, drawing, using tools). • Verbal processing speed – how quickly the brain produces spoken language in response to something. A child might have fast visual processing but slow auditory processing – meaning they do ok with reading but struggle when instructions are spoken. Or fast auditory

but slow motor speed – meaning they can answer questions verbally but fall behind on written work. This is worth knowing, because generic advice like “ just give them more time” works differently depending on where the bottleneck actually is. Some people use the analogy of processing speed as the internet connection speed of your brain – the content is all there, it’s just taking longer to load. That’s a reasonable starting point, but it undersells how much the type of connection matters. A child might have fast download but slow upload. Knowing which is which actually changes what you do to help.

IT SHOWS UP ALONGSIDE OTHER THINGS Slow processing most often appears as part of: • ADHD (particularly the inattentive type) • Autism spectrum disorder • L earning disabilities like dyslexia or dyscalculia • A nxiety or depression • L anguage processing difficulties • S ome genetic conditions • Brain injury or neurological conditions

EXECUTIVE FUNCTIONING

WHAT HELPS

THERE’S NO MAGIC SWITCH TO SPEED UP PROCESSING, BUT THERE ARE PLENTY OF WAYS TO WORK WITH IT RATHER THAN AGAINST IT. Break everything down. Instead of “Get ready for school,” try “Put your uniform on” and then, once that’s done, “Brush your teeth.” One instruction at a time. Build in extra time. If getting ready takes thirty minutes, allow fortyfive. If homework takes an hour, block out ninety minutes. Use visual supports. A morning routine chart with pictures can mean your child doesn’t have to process verbal instructions while they’re still half asleep. Checklists, timers, visual schedules – all of these reduce the processing load.

SIGNS OF SLOW PROCESSING SPEED At home, you might see:

• D elayed responses when you ask questions. • I nstructions needing to be repeated. • D ifficulty holding onto multi-step directions. • G etting stuck between steps, like they know what comes next but don’t quite get there. • Everyday routines dragging out longer than you’d expect. • T hat “somewhere else” look, when really they’re still working through what you said. It can easily be read as not listening, or ignoring you, especially in the rush of daily life.

At school, you might see: • W ork not finished in the allocated time. • S lower reading or writing. • Trouble copying things down before they disappear. • K nowing the answer but not getting it out quickly enough. • Falling behind in group discussions. • A voiding tasks that feel rushed.

You’ll often hear things like “they’re capable but just don’t get through the work,” which can be frustrating when you know there’s more going on underneath.

Reduce distractions. If your child’s brain is already working hard to process information, background noise or visual clutter makes it harder. Homework in a quiet space, one task at a time, screens off.

WHY DOES THIS HAPPEN?

Give processing time. After you ask a question, count to ten in your head before expecting an answer. Don’t fill the silence with more words – this just resets their processing.

Processing speed involves multiple brain networks working together – handling visual information, language, coordination. If any part runs slowly, the whole process slows down. The causes vary. In ADHD and autism, the executive function system – which organises and manages information – is often involved. Attention plays a role too: if your brain is managing sensory overload or filtering distractions, that uses up processing capacity. So does anxiety; a brain busy scanning for threats has less bandwidth for the task in front of it. Sometimes there’s a specific bottleneck in one area – visual processing, auditory processing, or translating thoughts into words. And sometimes it’s simply how a particular brain is wired, without a neater explanation than that.

Practice the actual skill. If your child struggles to process maths problems, having them practise maths problems (in a low-pressure way) can help build those neural pathways. Advocate at school. Your child might need accommodations: extended time for tests, reduced homework load, permission to use a laptop for note-taking, or someone who writes down homework assignments for them. A psychoeducational assessment – through organisations like SPELD – can identify where the bottlenecks are and what accommodations would help.

I SSU E 48 | S P R I N G 2026 39

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Beat the Clock: Battle Mode Beat the Clock is a fast-paced challenge that puts quick thinking, memory and decision-making to the test. Players race against the timer to complete tasks, encouraging them to process information quickly, stay focused and adapt their strategies under pressure. A fun way to practise processing speed, attention and flexible thinking through play. RRP: $28.95 | twigstoyboutique.com.au

R E A DY, SET, THIN K! These games and activities support the development of memory, attention, processing speed and problem-solving skills while keeping kids engaged and having fun.

Bugzzle Puzzle Bugzzle is a colourful brain teaser that combines hands-on play with problem-solving. Children use the curved pieces to recreate patterns from challenge cards, encouraging spatial reasoning, visual thinking, fine motor skills and logical problem-solving. With different combinations to explore, it’s a great way to build flexible thinking and persistence. RRP: $30.95 | thesensoryspecialist.com.au

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4 2 SO U RCEKI DS .CO M . AU

PRODUCTS

Shuttle Ball Shuttle Ball is a simple but challenging activity that gets children moving while practising quick reactions and coordination. Players use the paddle and ball to keep the shuttle moving, helping develop hand-eye coordination, visual tracking, timing and response speed. A great active game for building motor skills while having fun. RRP: $14.95 | thetherapystore.com.au

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With different game modes to explore, it provides a fun, screen-free way to exercise cognitive skills. RRP: $39.95 thetherapystore.com.au

Classic Jacks game A playground classic that combines skill, timing and coordination. Players toss the ball, pick up the jacks and catch the ball before it bounces again, requiring concentration, hand-eye coordination and quick responses. Classic Jacks helps develop fine motor control, visual tracking, dexterity and reaction skills through

Blink card game Blink is a fast-paced matching game

simple, screen-free play. RRP: $17 | sistersensory.com.au

that puts visual processing and quick thinking to the test. Players race to match cards by colour, shape or number, requiring them to scan information, make decisions and respond quickly. It’s a simple, engaging way to build processing speed, attention, cognitive flexibility and visual discrimination skills. RRP: $19.95 presentsofmind.com.au

Coggy problem solving puzzle Coggy is a bendable brain teaser that encourages children to think ahead, recognise patterns and adapt their strategy as the challenges become more difficult. With 40 puzzle cards across four levels, it helps strengthen working memory, planning, cognitive flexibility and problem-solving skills, all through satisfying, hands-on play. RRP: $29.95 | theotstore.com.au

I SSU E 48 | S P R I N G 2026 4 3

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• Advocacy navigating complex systems and the gaps in between • Strengthening collaboration around the child • Sibling mentorship and support • Tailored training and support • Building confidence, capability, and true inclusion.

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Security Blanket Monique Power asks what it takes to build a future that doesn’t rest on one person alone.

We don’t like to think about it, but most parents of a child with disab ility do: who will know them the way I do, once I’m not here to hold it all toget her?

EVERY CARER STITCHES TOGETHER A QUILT. Not with fabric and cotton, but with moments, routines and years of accumulated and wholly unique knowledge. You know the favourite toy. A bedtime routine that works. The support worker who can intuit needs. Which reliable specialist always calls back. What is guaranteed to get a laugh. How their eyes communicate when they are sick, scared or hungry. Each discreet micro expression you’ve devotedly and diligently learnt to interpret; a secret language only you and your child share, like a warm and worn blanket built for two. On their own, these pieces might seem ordinary to others, even unimportant. But you know that with time, they become something extraordinary. They create the fabric of your child’s life. Ask parents of children with disability what keeps them awake at night and, eventually, many arrive at the same answer.

What happens when I’m no longer able to do this? Who will love them the way I do, know them like I do, and support them how I do?”

4 6 SO U RCEKI DS .CO M . AU

It’s a question that is quietly carried by families across Australia. It’s thought about often, spoken about rarely, and even less frequently acted on early. Not because parents don’t care. Because they’re busy holding the threads together and stitching the fabric of the day-to-day. Between hospital appointments, therapy sessions, school meetings, funding reviews and the endless logistics of daily life, there is rarely space to think beyond the next hurdle, let alone imagine a future where someone else might need to step into your role. And perhaps that’s the problem. We’ve come to think of care succession as something that happens at the end of the journey. In reality, it’s something that should be woven through it.

Earlier this year, the Disability Assembly of WA convened over 100 families, siblings, providers and members of government to explore one of the most important, and least talked about, issues facing people with disability: care succession. While the conversations took place in Western Australia, the message resonated far beyond state borders. Carers described carrying the responsibility of coordinating every aspect of their child’s life whilst quietly wondering what would happen when they no longer could. It’s an important reminder that succession isn’t simply about who provides care. It’s about who holds the knowledge. Who else knows what matters to your child? Who understands their communication,

FUTURE PLANNING

sibling. Strong futures for everyone are built and sustained through relationships, shared knowledge and a true belonging in community. This is an organic – but highly intentional – process.

Perhaps that’s where we need to shift the conversation: From asking, “Who will look after my child?”…To asking, “Who is helping me hold the threads today and be likely to help me in all the ‘tomorrows’ to come?”

their routines, their fears and the things everyday moments. It’s introducing that bring them joy? another trusted adult to appointments. Who could advocate with confidence Writing down the little things only you because they’ve been equipped long before know (in a letter of wishes you update over a crisis arrives? time). Helping grandparents, friends or For many families, succession planning support workers understand not just the is imagined as legal supports your child needs, It’s an important paperwork to complete one but who they are as a reminder that day; wills, guardianship succession isn’t simply person. Creating circles arrangements, a letter of support. It’s about about who provides of wishes or financial finding opportunities for care. It’s about who holds the knowledge. planning. Of course, knowledge to be shared these conversations and rather than carried alone. commitments matter, and The Summit also there is no better time than the present highlighted the importance of building to make a start (if you have the resources intentional networks around people to do so). But they’re only one piece of a with disability, rather than assuming much bigger quilt. responsibility will naturally fall to one Care succession also happens in ageing parent, or eventually, to one

Because succession planning isn’t about replacing a parent. No one ever could. It’s about making sure the quilt you’ve spent years painstakingly and lovingly stitching isn’t held together by a single pair of hands, that could unravel in an instant. Every new relationship, every shared story and every trusted person who comes to know your child offers an opportunity for another thread to the security blanket. Over time, that quilt becomes bigger and stronger. When it is built from the hands of many, they help to hold it when you are gone. They become the community that already knows how to lovingly wrap around your child when they need that security blanket the most. And perhaps that’s the greatest gift we can leave our children. By Monique Power, co-founder and CEO, RippleAbility. RippleAbility is a paediatric specific disability provider, helping families navigate complex systems of support and build their capacity to advocate for appropriate supports and services for their child. Email: monique@rippleability.org rippleability.org I SSU E 48 | S P R I N G 2026 47

A personalised communication tool for Autistic people and people with brain injury of all ages

Your National Assistance Card can show: • your disability or health condition • areas where you may need understanding or support • additional information you choose to share through a QR code Your Card can support you in everyday situations or emergencies, especially when it is diﬃcult to explain what you need. A digital Card is also available. Find out more and apply online: nationalassistancecard.com.au

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R82 Crocodile AT size variant All terrain, all seasons, all smiles

The R82 Crocodile AT is designed for families who love spending time outdoors, no matter the season. With robust all-terrain wheels, the Crocodile AT handles wet paths, gravel tracks and uneven outdoor surfaces with confidence.

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Whether you’re heading away for a cosy family getaway, exploring regional towns or visiting loved ones during the cooler months, the Coaster Scout is ready for road trips and safe vehicle transport. When it’s time to pack up, it folds easily to stow in the car, SUV or campervan. From crisp coastal mornings to country escapes or bustling winter festivals, the Coaster Scout keeps family adventures moving comfortably all season long. FromTobeaches to bush tracks to bustling parks, the Coaster02 Scout learn more, please contact us orholiday visit our website: 8213 6666 keeps family adventures rolling smoothly.

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LOOKING AFTER you Is it possible to balance health and wellbeing and stay on top of the ever-growing load of parenting responsibilities?

his is a common question that parents of children and young people with additional care needs ask themselves periodically. Sometimes they ask it out loud. Mostly parents just wonder: is it me, am I enough? The question seems to reverberate when times get tough, the system of support around their child changes unexpectedly, or life events just happen when least expected. Yes, you are enough. It is not easy to answer the question of balance when parents are carrying a heavy load. As an occupational therapist and researcher for the past 36 years, I can say with confidence: • Parents are amazing • S omehow parents manage often under quite difficult circumstances • Every parent needs to find the motivation and develop the skills to support their own health and wellbeing alongside family life.

Parents are important people. You are an important person. Your health matters 5 0 SO U RCEKI DS .CO M . AU

HOW DO OTHER PARENTS FEEL. AM I ALONE? Over the years, we have conducted research with parents to uncover how they experience health and wellbeing. If you are struggling with your health and wellbeing right now, you are not alone. Here are some of the types of comments we’ve heard: “I realised I’m doing absolutely nothing for myself. I tend to get lost in looking after everyone else… My children come first…by the time I get to myself, I do not have enough time, it’s not a priority.” Mother of child with disability

“You’re so caught up in what’s happening with life that you do not even have time to think that you are not actually looking after yourself” Mother of child with disability

“I don’t get a lot of sleep, which affects my efficacy at work, also I’m quite stressed… It’s hard to explain, but whenever I’m out and about with my daughter, [I am] being constantly vigilant to her needs… I feel I need to make sure she’s not feeling overwhelmed and is safe” Father of child with disability

WELLBEING

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

WHAT IS WELLBEING?

There is no doubt that disability can mean much higher time and energy commitments from parents. Research indicates parents of children with disability spend substantially more time in childcare and associated tasks, and have less time for their own needs. We also know that parent energy and stress impacts family outings and participation in fun and enjoyable activities in the community. There are many reasons to find ways to protect your own health and wellbeing: you have a lot of responsibility within your family and unique life situation. You are an expert in your own situation and will know if your own behaviour has changed. Look out for examples such as: feeling dread receiving NDIA emails; extreme fatigue reading another report; avoidance of essential paperwork; constant anxiety or emotional numbness; or can’t remember when you last had a good night’s sleep. If you relate to any of these, your health and wellbeing may need to be addressed sooner rather than later.

Wellbeing is more than just the absence of illness; it is the happiness and satisfaction we feel within our daily life, including good health. Better health and wellbeing mean that you have sufficient energy and mental bandwidth to manage daily hassles and enjoy (or even notice sometimes) daily uplifts. It also means that you can more easily maintain supportive relationships and feel a positive sense of connection to your community. Wellbeing is personally experienced, and it fluctuates. Think about your sense of wellbeing right now. A quick self-check might involve: • How do I feel right now? • How is my mind working right now? • How does my body feel right now? If you are not satisfied with your health and wellbeing, it’s time to make changes. There is help available. Research shows that parents can make positive changes to support themselves. Improving your wellbeing may mean having time to read a book, feeling in control of your schedule, or simply enjoying a nutritious meal with the family. You can feel calm and happy. You might believe that you don’t have the time to think about your mental or physical health, or follow-up on something that has been reducing your feelings of wellbeing for a while. Our research shows that parents can make drastic improvements to their own situation with some supports in place.

WHY SELF-CARE IS IMPORTANT It is a common struggle to feel that you need to be superhuman to meet the needs of your child, but everyone has limits. Practicing self-care is a vital way to prevent exhaustion and illness and improve your own health and wellbeing.

HOW CAN YOU IMPROVE YOUR WELLBEING? Research shows that finding the time and support to participate in Health Promoting Activities (HPA) substantially improves wellbeing and health. These are selfselected actions that maintain your health, such as: PHYSICAL ACTIVITY Such as a vigorous walk alone or with a friend, playing a sport, dancing or anything that gets your heart rate up and the anti-stress hormones flowing. SELF-CARE PLANNING Such as purposefully planning what to eat and when to rest. REJUVENATING TIME Such as practicing mindfulness, listening to your favourite music, spending time in green spaces, or spiritual reflection/meaning making. QUIET LEISURE PURSUITS Such as reading, cooking for pleasure, spending time with family watching movies or visiting art galleries.

Participating in a range of activities just 2 to 3 times per week can lead to a significant reduction in signs of stress and anxiety and improved health and wellbeing.

I SSU E 48 | S P R I N G 2026 51

WELLBEING

IDENTIFYING WHEN YOU’RE NOT OK Acknowledging that you are struggling is not a sign of being inadequate, that you haven’t tried hard enough or that you don’t deserve better. It is really common to feel overwhelmed, because constant challenges navigating complex services, funding, and managing high care needs is a lot. Research is conclusive that parents experience much higher stress and strain on their mental health. You might have noticed changes in your appetite, sleep patterns, energy levels, or a loss of interest in things you used to enjoy. Other changes could include social withdrawal, increased alcohol/medication use, persistent feelings of hopelessness or even feeling angry a lot of the time. If you feel this way, reach out to supportive others around you. Get in contact with professional services such as:

• Keep yourself in balance

• Do things that make you feel okay • Contain activities and situations

that risk your wellbeing • Find time for yourself Protect time for yourself

• L IFELINE lifeline.org.au 131114 • C ARER GATEWAY carergateway.gov.au 1800 422 737 • B EYOND BLUE beyondblue.org.au 1300 22 4636 • B LACK DOG INSTITUTE blackdoginstitute.org.au • S ANE AUSTRALIA HELPLINE 1800 187 263 • M ENSLINE AUSTRALIA 1300 78 99 78 • H EALTHY MOTHERS HEALTHY FAMILIES healthymothers-healthyfamilies.com

HELP: finding a health

professional to connect with to support your health. Accepting support is an investment in your health and wellbeing. Your family and friends may want to help but don’t know where to start – be assertive and tell them what you need, whether it’s a listening ear or someone to attend an appointment with you. Many parents say that childfree time to attend health and medical appointments is a challenge. Try to build community around yourself to enable making, attending and benefiting from visits with a health professional. 52 SO U RCEKI DS .CO M . AU

If your self-check revealed feelings of poor wellbeing, it is probably time to get in contact with your general practitioner (GP) or trusted health professional to access formal support. Medicare provides Australian parents with numerous mental health and other services through your GP. The Carer Gateway provides free counselling and other support services. Do yourself a favour and make an appointment because there is help out there and you will benefit from health services for yourself. Afterall, as parents we do our best to make sure our children have the health care team around them that they need. Turning these skills towards yourself is smart and puts you on the pathway to better health and wellbeing.

If you feel that your concerns are brushed aside by health professionals, be persistent. Find a better listener. You are an important person. Your health matters.

A FINAL WORD OF ENCOURAGEMENT You are doing a great job navigating an incredibly complex path. You are capable of feeling good and looking after yourself. Finding time and protecting time for yourself and your health is important. Be kind to yourself. Remember that seeking help is a strength, not a weakness. Value yourself as much as your child/ren and family value you. You are an amazing person! ---------By Helen Bourke-Taylor, PhD

Professor Helen Bourke-Taylor PhD is an occupational therapists and childhood disability and parent researcher at Monash University. Helen is the founder of the evidence-based workshop and digital program Healthy Mothers Healthy Families (HMHF). HMHF is currently freely available at Belongside Families: belongsidefamilies.org.au/ our-programs/healthy-mothers-healthy-families

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HARD DAYS DON’T MEAN SOMETHING IS WRONG WITH US – Christine’s story The Source Q&A: stories from families living with disability. Tell us about your family – where do you live and who’s in your household? We live in Brisbane, Australia. Our family is made up of my husband and me, our two children, and our dog. Life in our home is full, unpredictable and often looks a little different to what people might expect. Our youngest son has complex disabilities and high support needs, so much of our family life revolves around appointments, therapies, advocacy and finding creative ways to help him feel safe and connected. Alongside all of that, we’re also just a family who loves being together outdoors, finding joy in the ordinary, and making the most of the moments that come a little easier.

What’s your child’s diagnosis and how does it affect their daily life? Our youngest son has multiple complex disabilities, including autism, ADHD, microcephaly, bilateral hearing loss and a rare genetic condition, along with several other medical diagnoses. He is nonspeaking and has high support needs. 5 4 SO U RCEKI DS .CO M . AU

OUR STORY

adjusting, sharing the load where we can. We also rely heavily on organisation, reminders, and sometimes just accepting that things will overlap or not go to plan. Over time, I’ve had to let go of the idea of “keeping on top of everything” and shift into something more realistic: staying responsive, staying present, and making decisions in the moment that protect our child’s wellbeing and our family’s capacity to keep going.

What led to his diagnosis? We knew from very early on that our son was developing differently. He missed milestones, faced significant challenges with communication, and his medical needs became increasingly complex. Over the years, we met with countless specialists, underwent extensive testing, and slowly pieced together the puzzle. Rather than one moment or one diagnosis, it was a long journey of observation, assessment and persistence. Some answers brought clarity, while others raised new questions. Like many families of children with complex disabilities, our experience wasn’t a straight path, it was a gradual process of understanding who our son is and learning how best to support him.

His disabilities affect almost every part of daily life. Communication, sensory processing, uncertainty, pain, medical procedures and changes to routine can all be incredibly challenging. He needs support with most everyday activities, and our family life often revolves around balancing his medical care with creating an environment where he feels safe, understood and able to participate in the world in his own way. Like every child, though, he is far more than his diagnoses. He’s curious, funny, determined and constantly teaching us to slow down, pay attention and see the world from a different perspective.

How do you handle the juggle of appointments, therapy, school and everything else? We’ve learned that there isn’t really a perfect system for juggling everything – there’s just constant recalibration. We plan ahead as much as we can, but we also build in flexibility because so much of our life is shaped by how our son is coping on any given day. Appointments and therapy get prioritised when they need to, but we’re also careful not to let the schedule completely take over the child in front of us. A big part of it is communication between us as parents – checking in,

What do you wish you could say to the parents at school/playgroup/in the community who may be uncomfortable around your child? I think I’d start by saying I understand the discomfort. When you don’t know a child’s story, or you’re met with behaviour that looks confusing or intense, it can be hard to know what to do or how to respond. What I wish people understood is that my child isn’t trying to be difficult or disruptive. He’s communicating the only way he can in moments where things feel overwhelming, unsafe, or out of his control. There’s usually a need underneath what you’re seeing, often around regulation, communication, or sensory overload. What helps most is not judgement or distance, but calm, simple humanity. A bit of patience. A bit of space. Sometimes just acknowledging him as a child who belongs, even if he’s struggling in that moment, changes everything. And for us as parents, what matters most is not perfection from others – it’s safety, inclusion, and the reassurance that our child is still welcome in the room, even on the hard days.

What part of your life as a carer do people on the outside just not see or understand? I think what’s hardest to explain is the invisible load that sits underneath everything. People often see appointments, behaviours, or the more intense moments, but they don’t see the constant scanning, I SSU E 48 | S P R I N G 2026 5 5

OUR STORY

planning, anticipating and adjusting that runs in the background all day. There’s a kind of forever alertness that doesn’t switch off. You’re always reading signals, trying to stay one step ahead of what might happen next, while also holding the emotional weight of not knowing what the day will bring. Even on “quiet” days, your nervous system doesn’t always get the message that it’s safe to relax. Another part people don’t often see is the decision fatigue. Everything requires a judgement call – what’s a behaviour, what’s pain, what’s sensory overload, what needs action right now versus what can wait. It’s constant micro-decision-making that adds up in ways that are hard to describe unless you’ve lived it. And then there’s the emotional layer that sits underneath it all – the love, the grief, the fierce advocacy, the exhaustion, and the deep commitment to just keep showing up again tomorrow.

What does “looking after yourself” actually mean in your world? Looking after yourself in our world has had to be redefined completely. It isn’t about routines or self-care in the traditional sense, it’s about survival, sustainability, and finding small pockets of restoration inside a very full life. Some days it looks like making sure I eat something before mid-afternoon or sitting in the car for five minutes of quiet between appointments. Other days it’s tagging in with my husband so I can step outside, breathe, or just not be needed for a moment. And sometimes it’s simply getting through the day without everything falling apart and recognising that as enough. I’ve also had to learn that self-care isn’t separate from caregiving in our home – it’s woven into it. It’s how regulated I am when things are hard, how supported I feel in partnership, and how quickly I can reset so I can stay emotionally available for my child. 5 6 SO U RCEKI DS .CO M . AU

On the days when it feels too hard, what keeps you getting up and doing it all again? I don’t think it’s one big motivating thought that gets me through. It’s smaller than that. It’s routine. It’s responsibility. It’s this love that doesn’t really give you the option to opt out. Some days I’m running on very little – sleep, patience, capacity – and I’m just doing the next practical thing in front of me. Get him settled. Get through the appointment. Make the next decision. Then the next one. What pulls me back into it, even on the hardest days, is him. Not in a sentimental way, but in a very real one. He still needs me to show up, even when I feel like I’ve got nothing left in the tank. And I know that staying steady for him matters more than how I feel in that moment. There’s also something grounding about knowing that hard days don’t mean something is wrong with us – they’re just part of the reality of caring for someone with complex needs. So I keep going, not because it feels easy or inspiring, but because it’s what love in action actually looks like most days.

Is there something that has made you really proud lately? Lately, I’ve been really proud of the way our son has navigated an incredibly difficult few weeks. He recently broke his foot, and for a child who is non-speaking, has significant sensory needs and finds medical environments overwhelming, that has been a huge challenge. He’s shown so

much resilience through hospital visits, scans, appointments and the disruption to his routine. I’m also proud of our family. We’ve learned that strength isn’t about handling everything perfectly – it’s about adapting, supporting one another and continuing to find moments of connection, even when life feels heavy. Those moments might not look extraordinary from the outside, but they’re the ones that remind me how much growth can happen in the middle of really hard seasons.

What’s one small change you’d love to see that would make life easier for families like yours? I’d love to see a little more understanding, and a little less judgement. So much of what families like ours need doesn’t require specialist knowledge – it just requires people to be curious instead of critical. To recognise that behaviour is communication, that disability isn’t always visible, and that every family is carrying a story you may know nothing about. Small acts of inclusion make a huge difference. A teacher who takes the time to understand a child’s needs. A business that creates a more accessible environment. Another parent who chooses kindness instead of assumptions. A stranger who offers patience instead of a stare. Those things might seem small on their own, but together they create communities where children with disabilities – and their families – feel like they truly belong. By Christine Cronin

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How does parent-child interaction therapy work? And who can use it?

hildren thrive when parents are warm and responsive to their needs, while also providing clear guidance and setting limits. This is known as authoritative parenting. But most parents will tell you authoritative parenting is easier said than done, especially when children have frequent intense emotions, big behaviours, meltdowns and outright defiance. These challenges can lead parents to wish they had a parenting coach helping them know what to do and say. Parent-child interaction therapy aims to do just that. It has been used in parts of Australia for around 20 years and is now available in some Western Sydney schools. So how does it actually work?

IT FOCUSES ON THE RELATIONSHIP Parent-child interaction therapy is based on attachment theory, which posits that quality relationships in childhood predict wellbeing. The parent and child play together in one room while the therapist observes in an adjacent room through a one-way mirror. 5 8 SO U RCEKI DS .CO M . AU

Using an ear-piece and microphone (or other communication device), the therapist acts as a coach to guide a parent’s responses to their child during play. Coaching guides parents as they use positive attention skills to respond to their children’s behaviours and emotions as they occur. Within such a supportive environment, this reduces the child’s problematic behaviour and increases appropriate behaviours. This guided, real-life practice gives parents the ability to use the techniques on their own, wherever they are, and enriches the parent-child connection.

HOW DO KIDS EXPERIENCE IT? Parent-child interaction therapy was first used in the 1970s to treat problem behaviours of children aged three to seven years. It’s now used from 15 months of age. Although the child can’t see the therapist through the mirror window, they are aware their parent can hear the therapist through the earpiece. From the child’s perspective, the play environment is often enjoyable and they get to spend high quality one-on-one time with their parent, enhancing the relationship.

THERAPY

The therapy also encourages parents to limit attention to unwanted behaviour when it’s safe to do so. A parent may be coached to avoid acknowledging when a child uses inappropriate language or “toilet talk”, for example. Practising these attention strategies can increase children’s positive behaviours and interrupt the cycle of worsening behaviour and negativity.

PARENTS PRACTISE AUTHORITATIVE PARENTING

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PARENTS LEARN THE IMPORTANCE OF THEIR ATTENTION Throughout the therapy, the parent directly experiences the importance of their own attention. When children get their parent’s attention for disruptive or other challenging behaviour, such as yelling, this can escalate children’s disruptive behaviour over time because parental attention makes any behaviour more likely to occur. Children will even seek this attention if it comes in the form of a parent yelling, correcting, or negotiating, especially if they get little connection or attention when behaving appropriately. In parent-child interaction therapy, parents use attention to reinforce their child’s positive behaviour. They practise giving positive attention for appropriate behaviour, such as praising and showing enthusiasm for children’s patience, kindness, good listening, or sharing.

During parent-child interaction therapy, parents practise real-time strategies for authoritative parenting that: • demonstrate warmth and responsiveness to their child’s needs • fairly and clearly state expectations for behaviour • a re consistent in developmentally appropriate consequences, especially for aggressive behaviour. Coaching focuses on responding kindly, while still setting clear boundaries and expectations for behaviour. For example, by saying: Thank you for following the rule of being gentle today. I really like when you do that at home with your brother, too.

WHO IS – AND ISN’T – IT SUITABLE FOR? Research from Australia and abroad shows this type of therapy can be effective for behavioural and related emotion regulation problems. It has also been shown to be effective among culturally diverse families and those who have faced adversity or have complex health and mental health challenges. Research shows additional benefits for parents. These include reduced stress, improved parenting skills and confidence and improvements in the ability to manage difficult emotions such as anger. Parent-child interaction therapy is most often used for children with conduct disorder, oppositional defiance disorder, and trauma-related conditions, as well as conditions where behaviour concerns can

be a symptom, such as attention-deficit hyperactivity disorder (ADHD) and autism spectrum disorder. However, it can be used for children without any mental health diagnosis. It’s not recommended when there are safety issues or unstable relationships in the family or home environment. In these instances, other interventions should be prioritised over treating children’s behaviour concerns.

THE DOWNSIDES Parent-child interaction therapy is time consuming and resource intensive. Therapy typically lasts 14 to 16 weeks, with most sessions involving both parents and children. Research shows repeated practice can lead to more sustained improvements in children’s behaviour. So it can involve a big commitment from parents. Parent-child interaction therapy is delivered by qualified mental health service providers such as registered psychologists and social workers. They require extensive training, ongoing professional development and program training from an approved provider, as well has months of supervised practice. They also require specialised rooms and equipment. This can limit access. Currently in Australia, the program is offered at a few universities and in some school settings, with costs often offset by public funding. There are few private providers. Behaviour problems are the most common reason parents seek support for children. Supporting them with evidencebased programs or therapies – whether that’s parent-child interaction therapy or others – can deliver wide-reaching benefits across their lifespan. ----By, Shawna Mastro Campbell, Associate Professor in Clinical Psychology, Bond University, Melanie J. Zimmer-Gembeck, Professor of Psychology, Griffith University & Tanya Hawes, Program Co-ordinator/ Psychologist, Griffith University I SSU E 48 | S P R I N G 2026 59

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SUPPORT YOUR CHILD’S BIKE RIDING JOURNEY

earning to ride a bike is an exciting milestone for many children. It builds confidence, encourages physical activity and creates opportunities to explore the world with family and friends. Every child’s journey will look different, and that’s okay. Whether they’re using a balance bike, twowheel bike, training wheels, an adapted bike or a trike, the goal is simply to have fun and participate in a way that works for them.

1 | THE RIGHT BIKE MAKES ALL THE DIFFERENCE Finding a bike that suits your child’s size, abilities and goals can make learning much easier. Your physiotherapist or occupational therapist can help you choose the right bike or adaptations by considering how and where your child will be riding most often. The best bike is the one that supports your child to participate and enjoy the experience.

2 | CHECK THE FIT BEFORE YOU START A properly fitted bike is safer and easier to ride. The seat should allow a slight bend in the knees while pedalling, and the handlebars should be easy to reach without your child having to stretch. Your child should be able to comfortably place at least the balls of their feet on the ground when learning, depending on the type of bike and their riding goals. 62 SO U RCEKI DS .CO M . AU

3 | SAFETY ALWAYS COMES FIRST A helmet is essential, along with enclosed shoes for good grip. If your child uses an adapted bike or trike, check that any harnesses, belts or supports are secure before every ride.

4 | CONFIDENCE COMES BEFORE RIDING Your child doesn’t need to pedal straight away. Start by simply sitting on the bike, exploring how it feels, practising getting on and off, squeezing the brakes and turning the handlebars. Feeling comfortable with the bike is the foundation for learning to ride.

PHYSIO TIPS

9 | CELEBRATE EVERY SUCCESS Every achievement is worth celebrating, from sitting on the bike independently for the first time to riding a few metres or mastering the brakes. Learning takes time, and every child progresses at their own pace. Some days will feel easier than others. It’s completely normal for children to need lots of practice or revisit earlier skills before moving on.

10 | REMEMBER EVERYONE’S BIKE RIDING JOURNEY IS DIFFERENT

5 | CHOOSE THE RIGHT PLACE TO START Look for a flat, smooth and quiet area with plenty of space to move. Parks, empty basketball courts or shared pathways away from traffic can be great places to practise. A familiar environment with few distractions can also help children focus on learning new skills.

6 | BREAK IT DOWN INTO SMALL STEPS Riding a bike involves lots of different skills. Practise one skill at a time, such as: • Sitting and balancing • Getting on and off the bike • Pedalling • Steering • Braking Learning one skill at a time helps build confidence and makes the process more enjoyable. Once your child is confident with each individual skill, they’ll be ready to put them all together and enjoy the excitement of riding.

7 | DON’T BE AFRAID TO ADAPT Sometimes a small change can make a big difference. Equipment such as pedal straps, pelvic supports, steering aids or hand supports can help children ride more safely and successfully. Your physiotherapist or occupational therapist can help identify what might work best for your child.

8 | LEARN ALONGSIDE OTHERS Inclusive bike riding programs are a wonderful way to build skills while having fun. They also provide opportunities to meet other families, learn from experienced instructors and enjoy being part of the community. Riding with others can also boost motivation and confidence.

The goal isn’t to ride like everyone else. It’s to find the way of riding that works best for your child. Bike riding supports confidence, physical activity, independence and participation in everyday life. However, your child rides, they’re building skills, exploring their community and creating lasting memories. Every child deserves the opportunity to experience the joy of bike riding in a way that suits their individual needs and abilities. With the right support, equipment and encouragement, bike riding can become a lifelong source of fun, confidence and participation.

Jade Carnall is a physiotherapist and the Clinical Director of the Brisbane NAPA clinic. Learn more about NAPA’s services and how they can support your child at napacentre.com.au

I SSU E 48 | S P R I N G 2026 63

ut d a d v ic e a b o n a s p ti u o y B ri n g in g fr o m e te c h n o lo g y iv it is s s a r u ls . yo p ro fe s s io n a g in d a le ’s a Au s tr a li

BUILT to RIDE

From supportive seating to hand controls and carer steering, here's how the right adaptations can help every child enjoy the freedom of cycling.

iding a bike is a quintessential from family members, carers, or therapists. childhood experience. It is about Working closely with the child’s support joining siblings and friends, team, we focus less on a particular product exploring the outdoors, building and more on function, participation, and confidence, and experiencing the simple possibility. joy of riding. Importantly, there is no single solution Every child deserves for all. Some riders may do We approach the opportunity to ride a well on a bike fitted with bike. However, for a child outriggers (stabilisers) for adaptive cycling by with disability, a standard considering the key extra balance, while others bike might not provide may benefit from a trike functional domains the comfort, stability, or that gives more stability involved in riding: control needed for safe and support. For children transfers, posture, and enjoyable riding. who do not have function pedalling, steering, Adaptive bikes, of their lower limbs, trikes, and handcycles help handcycles can offer an and braking. bridge that gap. Rather enjoyable and active way than expecting the rider to fit the bike, the to ride. The right choice depends on the bike can be adapted to fit the rider. individual's abilities, goals, and support At Freedom Solutions Australia, we needs. begin by understanding the child first. We We approach adaptive cycling by look at how they move, sit, use their arms considering the key functional domains and legs, and what support they may need involved in riding: transfers, posture,

6 4 SO U RCEKI DS .CO M . AU

pedalling, steering, and braking. Understanding these areas can help identify the supports that may assist a child to ride successfully.

Starting with transfers Before a child can ride, they need to be able to get on and off the cycle safely and comfortably. Several adaptations can make transfers easier, safer, and more independent. These may include adjustable handlebars that move out of the way to create extra transfer space, low step-through frames that make it easier to move the legs across the bike, step blocks to provide additional height when needed, and swivel seats on some trikes that rotate to improve access. To improve safety during transfers, most bikes and trikes are fitted with parking locks or stabilising mechanisms that stops unwanted movement while the rider is getting on or off.

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A well-supported seated position can make steering, and most importantly pedalling, much easier. Common postural supports may include flat back supports, lateral supports, pelvic belts, headrests, and customised seating options. A variety of seats are available, ranging from small to large, with different shapes and support features to help find the right fit for each child. For some riders who require additional support, harnesses can be added to help maintain upright alignment and reduce unnecessary movement. These supports can be particularly beneficial for children with reduced upper body control, fatigue, fluctuating muscle tone, or asymmetrical posture. The goal of postural adaptations is to provide the right level of support while encouraging the child to actively participate in riding.

Sad

Posture: Creating a stable base for movement

sea

pedal system or whether they are able to use a freewheel pedal system. This depends on the child’s strength, coordination, and pedalling ability. From there, we look at foot positioning and support. Common adaptations may include toe clips, straps, foot cups, and heel support pedals to help maintain foot position and improve comfort while riding. For riders with more complex postural or alignment needs, crank lengths can be modified, heel plates can be added, and knee abductors can be prescribed for children with windswept knees. For children who experience fatigue or require additional assistance, careroperated electric-assist systems can provide support while still encouraging active participation. These systems can help riders travel further, ride for longer, and remain engaged in the cycling experience.

Steering with confidence

Pedalling: Supporting active participation Pedalling can be one of the most rewarding aspects of riding, and the right setup is crucial. One of the first considerations is whether the rider would benefit from a fixed-wheel

The right handlebar setup can significantly improve control, comfort, reach, and hand positioning. A variety of handlebar styles are available, including upright, looped, and adjustable handlebars, each offering different benefits depending on the rider’s needs. Custom handlebar solutions can also be developed to support individual positioning, access, and control requirements. For some children with behavioural, cognitive, or intellectual challenges, carer-controlled rear steering may be an appropriate option. This allows a parent or support person to assist with directional control while the rider remains actively involved in the cycling experience.

Braking and safety Braking is a vital part of safe riding and should be matched to the rider’s abilities. Brake adaptations can be made to improve the child’s ability to slow or stop the cycle safely and confidently. Common options include repositioning the brake levers to the dominant side, modifying lever reach, using dual-pull brakes, or adding back-pedal brakes, depending on the rider’s strength, coordination, and hand function. Where additional support is required, carer-operated braking systems can also be added, allowing a parent or support person to assist with slowing or stopping the cycle when needed.

Creating opportunities through cycling Every child has their own unique strengths, challenges, and goals, and adaptive cycling is about finding the right combination of supports to help them succeed. By considering the five functional areas of riding, transfers, posture, pedalling, steering, and braking, families can better understand the adaptations available and how they may support their child's participation. From bikes with stabilising outriggers and supportive trikes to handcycles and highly customised solutions, adaptive cycling can help remove barriers and create opportunities for children and young people with disability to experience the physical, social, and emotional benefits of riding. With the right support, more children can build confidence, develop skills, and enjoy the freedom, independence, and fun that cycling brings. To learn more about Freedom Solutions Australia and its Freedom Wheels product range, contact 1300 663 243, email info@freedomsolutions.org.au, or visit freedomsolutions.org.au.

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Watches and Reads Books and shows on our radar right now… GARY’S GIGANTIC DREAM by Dr Nicole Julia Occupational therapist and bigtime advocate for an inclusive, accessible, universally designed world, Dr Nicole Julia is the author of Gary’s Gigantic Dream, the first book in The Able Fables series. This upbeat, rhythmic story follows Gary, a young giraffe who is assessed for his first wheelchair. Once he has his new chair, Gary discovers newfound independence, a zest for life and a gigantic dream of his own. amazon.com.au

BOSS CAT (coming soon) The trailer is out for Boss Cat, the first feature film from Australian inclusive filmmaking organisation Bus Stop Films. Written and directed by Genevieve Clay-Smith, the film puts disability inclusion at the heart of both the story and the production, with disabled actors and crew involved throughout. Starring Olivia Hargroder, Penny Downie and Julia Savage, Boss Cat will be released in Australian cinemas on December 3, International Day of People with Disability. Watch the trailer now for a first look. youtube.com

Win with SOURCE + NAPA * Win with SOURCE + NAPA * Win with SOURCE + NAPA NAPA Centre is celebrating 10 years in Australia and they are giving Source readers the chance to win one of 10 $1000 therapy boosters to put towards an intensive in one of their 3 Australian clinics! NAPA Centre specialise in providing multidisciplinary physiotherapy, occupational therapy and speech and feeding therapy for children with complex physical disabilities. Their worldleading interventions are sourced from all over the world and therapists trained to the highest standards to ensure that your child receives the very best care in their intensive and weekly therapy. Our prize consists of 10 X $1000 credits to put towards an intensive therapy program at any of the NAPA Centre Australian clinics located in Sydney, Melbourne and Brisbane. Our winners will have up to three years from the draw date to utilise the prize, which cannot be used in conjunction with any other offer. There are three chances to win throughout the year with the final set of $1000 credits up for grabs now.

Will you be one of our final 3 lucky winners? Enter now at sourcekids.com.au/win 6 6 SO U RCEKI DS .CO M . AU

WATCHES AND READS

Listen

EDWARD’S ASTONISHING ANIMALS by Michael Theo Quiet young Edward has a secret: he can transform into all kinds of animals. Written by Michael Theo, the autistic star of Love on the Spectrum and Austin, this charming picture book celebrates difference, self-belief and the things that make each of us unique. amazon.com.au

HOW TO HANDLE MORE THAN YOU CAN HANDLE by Amanda Griffith-Atkins Written by therapist and parent Amanda Griffith-Atkins, this practical guide explores the emotional realities of raising a disabled child with high support needs. It covers everything from diagnosis and accessing resources to guilt, relationships, identity and worries about the future, with a focus on self-compassion and moving out of survival mode. amazon.com.au

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Hosted by Mel Harrison, Disability Fail 101 takes an honest and often funny look at the awkward, well-meaning moments around disability that completely miss the mark. Each episode explores everything from accessibility and adaptive fitness to travel, work and recreation, with candid conversations about the weird interactions, assumptions and faux pas that disabled people encounter. 2rph.org.au/disability-fail-101/

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BIKES& TRIKES From balance bikes to power-assisted rides, there’s a set of wheels out there for every ability. C Y A

P E T R A F R A M E RU N N E R S Manufacturer: ConnieHansen Supplier: RTD Australia Weight: 30-100kg Height: 110-193cm • T he Petra Frame Runner is designed for multiple activities including basic mobility, play, family rides, sport and physical fitness. • Available in seven sizes, catering for ages 18-months to adult, with a wide range of support options to suit all abilities. • Rolls so freely that even children and adults using power wheelchairs can propel themselves by their own efforts.

BAL ANCE ROOK IE BIKE Manufacturer: Kidvelo Bikes Supplier: Xchange Sports Australia, Kidvelo Bikes Australia Weight: Up to 30kg | Height: N/A • T he Rookie Balance Bike helps toddlers as young as two learn how to ride a bike without needing stabilizers or training wheels. • L ightweight, with an adjustable seat range of 30-44cm and comes in four bright neon colours. • L earning balance before pedals are introduced speeds up the transition to a pedal bike - it is far easier to learn one new skill than three at one time (such as balance, pedalling and braking).

M U S K A T E E R A DA P T I V E T R I C Y C L E Manufacturer: Everybody eBikes Supplier: Everybody eBikes Weight: Up to 60kg | Height: Up to 150cm • Rear steer with controls on handlebar or rear steer and can be supplied as mechanical or electric. • P ostural supports including back, head & lateral supports. • A ble to be configured as a standard trike without rear steer and/or postural supports.

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GREAT FIRST BIKE!

PRODUCT REVIEW C Y A

E Z I S T E P 2+2 Manufacturer: Everybody eBikes Supplier: Everybody eBikes Weight: Up to 100kg | Height: Up to 180cm • Versatile folding trike, with removeable (quick release) rear stabilisers. Perfect for transporting in a car yet having stability of a trike. • C an be reconfigured to fit 6 years up to adult, and also as a two-wheeled bike if rider is confident. • P otential for wide range of modifications to suit rider’s needs (e.g. side steer, remote cut-out).

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TRIVEL 350 Manufacturer: Trivel | Supplier: Alivat Weight: Up to 110kg | Height: N/A • L ong lifecycle, simply remove, add or adjust components and the trike will adapt as your child grows. • L ow centre of gravity and multiple stabilsation options so is an excellent choice for kids with motor challenges.

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T O O G E T H E R A DA P T I V E E B I K E Manufacturer: Nijland Cycling Supplier: Dutch Cargo Bikes Weight: Up to 220kg | Height: N/A • T he Toogether makes it possible for passengers with a physical and/or intellectual disability to safely take a bike ride. • A rmrests and a seat belt are optionally available for the passenger seat. Both seats and handlebars are adjustable for a relaxed sitting position. • S even-speed Shimano. Passenger can pedal but does not have to.

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FOLLOW ME MOMO Manufacturer: Schuchmann Supplier: APEX Mobility Weight: Up to 80kg Height: N/A

TANDEM COUPLING SYSTEM

• Follow Me Momo is a clever parent-child tandem coupling system to connect the Momo Tricycle to any adult bicycle. • F its onto all 66cm and 68cm adult bicycles. • Pivot function for safety – so the tricycle and parent bike can tilt independently of each other.

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Manufacturer: Freedom Concepts Supplier: RTD Australia Weight: Up to 68kg | Height: N/A • D esigned specifically to help children of all abilities to increase mobility and gain independence through cycling. • Four models in the range to suit from 18 months and up, includes supportive seat to improve and maintain posture for efficient cycling. • P owered option and new folding frame option for easy transport.

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R E H A T R I E L E C T R I C A DA P T I V E T R I C Y C L E Manufacturer: Rehatri Supplier: Everybody eBikes Weight: Up to 110kg | Height: Up to 170cm • Available in 16” and 20” 40cm and 50cm wheel size models and has rear steer + carer controls all in electric or mechanical versions. • Fully adjustable postural supports with options for head rest and 4 point harness. • S eat adjusts along the frame and up and down to provide wide transfer area and recumbent seat position. • Option for fixed / freewheel interchange gearing.

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TRIVEL AZTECA Manufacturer: Trivel Supplier: Alivat Weight: Up to 160kg | Height: N/A • Height and angle adjustable handle. • A wide set of accessories for trunk stabilisation. • Available with Power Assist.

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F R A M E RU N N E R Manufacturer: RAD-Innovations Supplier: Freedom Solutions Australia Weight: N/A | Height: Up to 200cm • Increase your cardio fitness running in a frame runner. Stretch your legs, be fit and healthy in the park or compete on the track. • L ightweight aluminium frame for easy movement. • W ide range of seat and support options to suit every individual.

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PRODUCT REVIEW C Y A

HOP TRIKE Manufacturer: LIW Care | Supplier: Alivat Weight: Up to 150kg | Height:Up to 180cm • Height and angle adjustable handle. • A wide set of accessories for trunk stabilisation. • Available with Power Assist.

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MOMO TRICYCLE Manufacturer: Schuchmann | Supplier: APEX Mobility Weight: Up to 120kg | Height: N/A • T he Schuchmann Momo trike is beautifully designed to provide both therapeutic and riding pleasure with features that optimise comfort and ease of pedalling. • L ow centre of gravity, ultra-low bar and wide frame makes it

TERRIER

easy to get on and off the trike safely and independently. • Multi-directional seating adjustments, available in six sizes to suit all ages and a selection of frame colours.

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ROTOR HAND CYCLE Manufacturer: Tomcat

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I M P, T E R R I E R A N D T M X T R I K E S Manufacturer: Theraplay

Supplier: Freedom Solutions Australia

Supplier: Paragon Mobility

Weight: Up to 120kg | Height: N/A

Weight: 32kg to 90kg | (available in 3 sizes)

• The Rotor Hand Cycle is a multi-speed trike for teens

Height: N/A

and adults with limited or no use of the legs. • A flat, cushioned seat with optional swivel and detachable, swing away leg supports enable easy access as well as providing extra security and support for the rider. • Its frame is light-weight and it comes apart easily for transport and storage.

• T heraplay trikes are modular and adaptable to the rider’s needs, with optional positioning accessories to provide comfort and support if the rider needs it. • Multiple gearing options available, including freewheeling option, when fatigue occurs. • T he Terrier and TMX are foldable and have the ability to be hitched to a family member’s bike.

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Manufacturer: Ormesa | Supplier: APEX Mobility

Weight: 60kg - 100kg | Height: 120cm - 190cm • Light weight frames in 3 sizes (small, medium and large) and frame padding. • Multiple saddle options with adjustable positioning and easy transfers. • Highly supportive and adjustable trunk support.

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FORCE 3 HANDCYCLE Manufacturer: Top End Supplier: Push Mobility Weight: Up to 158kg | Height: N/A • T he Top End Excelerator is an ultra-manoeuvrable upright three-wheel handcycle featuring ovalised ergonomic hand pedals and performance wheels. • S table, oval tube carbon steel frame construction with adjustable sliding seat makes transfers in and out easy. • Features a Shimano seven-speed internal hub with reversing drum brake and is capable of speeds up to 24km/h.

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MOMO THERAPY BIKE Manufacturer: Schuchmann Supplier: APEX Mobility Weight: Up to 100kg | Height: N/A • Individual drive – from a rigid drive via a seven-gear freewheel brake hub, right

SUPPLIERS For a full list of suppliers - scan QR code

up to an electrical support. • L ow access level as standard feature which permits the rider to climb on conveniently and also allows independent transfer. • S tabiliser wheels can be adjusted from rigid to very soft which helps train balance, co-ordination and endurance.

A DA P T I V E T R I C Y C L E

Manufacturer: Rifton Supplier: APEX Mobility Weight: Up to 140kg | Height: N/A • T he Rifton trike provides the therapeutic benefits of cycling including lower extremity strengthening, balancing skills, visual/spatial perception and social development. • T here is a hidden stop to prevent oversteering, and a low gear ratio that helps to slow the trike down. • Features large, puncture-proof BMX-type wheels that are easy to use outdoors and indoors. No-tool adjustments make it easy as the child grows.

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THIS IS NOT DRAMA AS YOU KNOW IT! TOWNSVILLE 28 September For young people with intellectual disability aged 3-30.

BRISBANE 1 October

We welcome young people and their support person to a joyful, non-verbal, music-based creative drama session where there is no right or wrong way to participate. Led by the Director of the world-leading Open Theatre Company (UK), these highly accessible sessions use music, movement, sensory exploration and imaginative play so everyone can take part. Suitable for young people with mild to profound intellectual disability. “You guys rock! As evidenced by how involved and engaged everyone was in the sessions. A highlight of our week!” - Jen, Mother

“I have loved watching the kids engage in such a fun and safe environment! Everyone has a great time and gets involved in one way or another.” - Kate, Support Worker

FIND OUT MORE OR BOOK 0427 814 613 • hello@inpersoncreative.com inclusivecreativepractice.com/free-sessions

RELEVANT+ RELIABLE+ VIBRANT+ POSITIVE

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QLD

FREE SCHOOL HOLIDAY CREATIVE PLAY SESSIONS

NSW

Connect, Share, Belong MyTime is a FREE peer support program for parents and carers of a child with a disability, chronic medical condition or other additional needs including developmental delay.

FIND YOUR LOCAL PLAYGROUP NSW MYTIME GROUP To register or find out more information contact: 1800 171 882 or visit playgroupnsw.org.au

Helping children build confidence, independence and the skills they need to thrive through individualised, play-based therapy.

Our Services Occupational Therapy

Speech Pathology

ENQUIRE NOW

Book an assessment today

Physiotherapy

Hornsby Epping Gosford NDIS & private clients welcome

VIC

Allied Health Services available. Don’t wait to get support. Our caring, multi-disciplinary team work together to deliver high-quality evidence-based care to support children and individuals to achieve their goals. Supports are available.

Supporting children up to the age of 12 in areas of:

Waitlists move quickly, with resources or short term support available whilst awaiting allocation.

� Speech Pathology (short term blocks available for Gippsland region)

We offer in-person consultations, telehealth and in-home sessions for all services. Allied health services can be accessed through NDIS funds or your own funding (out of pocket or private health insurance).

Get in touch today to find out more, we are here to help.

� Dietitian � Occupational Therapy � Physiotherapy � Psychology � Early childhood development Supporting individuals over the age of 12 in areas of:

� Dietitian � Psychology

1300 946 337 1300 946 337 NDIS@windermere.org.au www.windermere.org.au

We are located at a number of sites in Victoria and offer services state-wide. NDIS Registration Number: 4050001510

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