Source Kids Magazine Winter 2023

It’s all about you

PARENTS & CARERS ISSUE

RETURNING TO WORK + STUDY

MENTAL HEALTH

DADS AND DISABILITY

SOLO PARENTING AND CO-PARENTING

DIAGNOSIS:

FRAGILE X

GYMNASTICS

GO FOR GOLD

PLUS STANDERS REVIEW

PUBERTY CHANGES

THE POWER OF MUSIC

TURNING 18

THE FUTURE IS BRIGHT: gene therapy & vision

Connect with independent support workers that get your goals.

Mable is where you can find support to achieve your goals, like joining a team. Build a list of approved independent support workers based on your interests, hobbies and skills.

HELLO

Source Kids is 9! And wow, what a ride those 9 years have been.

When I started Source Kids all those years ago, I had no idea what it would become. I had some pretty grand plans but never in my wildest dreams did I think it would become the powerhouse that it has that would help so many people.

So far we’ve created and delivered 35 magazine issues, 8 eMags, 13 expo events, 3 Source Mama events, 34,000+ social media followers, millions of website visitors and so much more.

We’ve built an incredible community of families walking the same path. We’ve celebrated the highs and lows together. We’ve loved, laughed and lost, supporting each other along every part of the journey.

I’m incredibly proud of what Source Kids has become and the incredible impact it has made to so many. And I am so grateful to our amazing team who work tirelessly and passionately to make a difference to support parents and families of young people living with a disability, thank you.

It seems fitting that this issue is our Parent Issue. We shine the light on parents and carers and your mental health, relationships, getting back to work and a dad’s perspective of disability parenting. We also look at puberty and turning 18, music therapy, gymnastics, genetic therapy for the eyes and so much more. We hope you enjoy the read.

And finally – a big shoutout to our community, you are all amazing. Thank you for supporting Source Kids over the past 9 years and we can’t wait to share more over the coming years.

Much love, CEO/Founder

MAGAZINE

CONTENT EDITOR: Nicole Davis

PRODUCT EDITOR: Kelly Wilton

HEAD OF SALES & BUSINESS DEVELOPMENT: Matthew Rainsford, matthew@sourcekids.com.au

0409 418 362

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

GRAPHIC DESIGN: Emma Henderson

PUBLISHER/CEO: Emma Price

Editorial

COVER: Photographer Nicole Paton met Mum Tori and her adorable son Issac at the Source Kids Expo in Sydney and has stayed close throughout his cancer journey.

nicolepatonphotography.com

Instagram@nicolepatonphotography

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

MADMIA – CRAZY AND COOL SOCKS FOR WINTER

Keep legs extra warm this winter with socks from MadMia. With so many cool and crazy styles to choose from, we bet you will get more than one pair! Great for AFOs too, so we’ve been told! madmia.com

CARTWHEELS, ANYWHERE, ANYTIME!

We love this perfect-sized mat for our budding gymnasts to practice their twists and turns! The Hart Sport mat has markings on both sides to help with the placement of hands and feet when practising handstands and cartwheels. hartsport.com.au

ADAPTIVE FASHION LABEL CHRISTINA STEPHENS NEW SEASONAL WINTER WARMERS

We love these winter threads for a stylish season wherever you are in Australia! With names like Karni Glitter Top and Natasha Physio Leggings, both named after incredible Australian sports women with disability Karni Lidell and Natasha Price, we think you will love them as much as us!

*Christina Stephens Clothing can be purchased using NDIS funds: under Core Supports. christinastephens.com.au

ADAPTIVE ICE SKATING

Don’t forget to check out the adaptive ice-skating sessions near you if you have a child who is keen to slide on the ice. Ask your local centre if they stock a regular frame or even a fun penguin! These are great stabilisers for kids who are new to the ice, unsteady on their feet or require assistance with balance.

PLAY SCHOOL SHOW TIME – ABC KIDS

If you haven’t already checked out the ABC Kids Series 4 of Play School Show Time, you must do! One Source Kids family has watched the series through twice, it’s that great! With guests like Chloe Hayden, Dylan Alcott, and Emma Memma, it’s a whole lot of inclusive fun! iview.abc.net.au

TINNITOTS SENSORY POD

A feature at our Source Kids expos for 2023 is this incredible light up sensory pod from Tinnitots! A wonderfully engaging and sensory experience for you and your child, at any age! tinnitots.com.au

WHEELCHAIR AFL

Wheelchair AFL is a great sport to get involved in this season all around the country. With 5-a-side and adapted rules on a basketball court, it is great for building strength and agility. Find a club near you. sports.org.au

YOUNG CARERS BURSARY – FUNDING BOOST

The Young Carer Bursary Program provides financial assistance to young carers aged 12-25 who are taking on extra caring responsibilities for their loved ones. The bursaries are intended to reduce the need to undertake part-time or full-time work while studying. Each bursary will also increase from $3000 to $3768 in July 2023, when the new round begins. youngcarersnetwork.com

Parents & Carers

Returning to work + study

The decision to return to work while raising a child with a disability can be accompanied by a unique set of challenges. Despite the emotional and logistical barriers that we face - and acknowledging that work may not be a realistic option for some - parents often have compelling reasons to re-enter the workforce, including financial stability, personal fulfilment, and even (yes, it’s ok to say it) respite from the demands of caregiving.

Your mental health, relationships, services to help you get back to work, and a dad’s perspective of disability parenting; in this special feature we’re turning the spotlight on you...

WHAT ARE THE OPTIONS FOR YOU?

So, if you are thinking about going back to work, how do you go about it?

Putting on your metaphorical work boots again after any time out can be a daunting prospect, but fortunately there are several organisations around Australia that can assist parents of children with a disability who are seeking employment. Many services focus on re-training and study options - as you may find that a career switch is necessary in order to balance work and family demands.

Carers Australia and the member caring organisations in each state and territory have a number of resources to help. We have identified some of their programs relevant to the individual state-based organisations below.

CARERS NSW

The Carers NSW toolkit supports carers to achieve their employment goals. A stepby-step guide includes practical examples and templates to help carers identify and achieve realistic pathways to employment. Download the toolkit here: carersnsw. org.au/services-and-support/advicefor-carers/paid-work

The My Skills national website myskills.gov.au also includes information on TAFE NSW VET courses, and eligibility criteria for subsidised courses.

Parents & Carers

CARERS VIC

Carers Victoria currently has a number of initiatives underway to support carers who wish to enter/re-enter paid employment, vocational training and education.

If you would like further information or would like to discuss your situation or explore options, please email employment.support@carersvictoria.org.au with your contact details.

CARERS QLD, CARERS TAS, CARERS SA

The Your Caring Way program is a free program designed to support unpaid carers in Queensland, Tasmania and South Australia in achieving their vocational goals.

The program aims to empower carers, providing them with the tools and knowledge they need to thrive both personally and professionally. Plan - A Vocational Support Planner will work with you to create your personalised goals plan based on your aspirations, dreams and current caring responsibilities. Grow - Gain the skills you need through a range of training and upskilling options. Achieve - Whether it’s employment, volunteering, or even further study, they will help you to live your best life.

Training can be done through Carers Qld, SA or WA Registered Training Organisation (RTO) or a different training provider. yourcaringway.com.au

CARERS WA

The Carers Connect program can assist you to use transferable caring role skills and discover opportunities to gain a qualification and paid employment.

This includes career counselling, ongoing coaching, assistance to enrol in accredited training as well as possible access to a financial assistance package. Carers who have an interest to work within Aged Care, Community Service, Disability, Healthcare, Mental Health or other industries with skills shortages are eligible. carerswa.asn.au/carers-inemployment-program/carers-connect

NATIONAL SERVICES

Carers Gateway // 1800 422 737

Carers Gateway is a government-funded program in Australia that provides a range of services and supports to unpaid carers. carergateway.gov.au

Women who care

As women represent 7 out of 10 primary carers, the Women Who Care hub by Carers Australia provides resources to support and acknowledge that it can be challenging for women to work, study or volunteer while also providing care. This information hub provides information, resources, and opportunities for both carers and employers.

carersaustralia.com.au/programsprojects/women-who-care

Also, keep an ear out for the Carers Australia podcast, The Secret Life of Carers. Season 3 will be launching soon, which will focus on women who care and their experiences in the workplace.

Know your rights

Carers have a number of rights that protect them in the workplace. This includes:

• the right to request flexible working arrangements.

• the right to take carer’s leave (paid or unpaid)

• the right to be protected from discrimination to harassment in the workplace as a result of their caring responsibilities.

If you are having problems within the workplace, head to the following sites for professional advice. fairwork.gov.au/ leave/sick-and-carers-leave and humanrights.gov.au/quick-guide

Carers Australia is the national peak body representing Australia’s unpaid carers, advocating on their behalf to influence policies and services at a national level carersaustralia.com.au

The Joy to Move Freely

As market leaders in special needs equipment in Australia, Astris PME carries an extensive range of devices that have been created to meet the needs and requirements of people who want to improve their everyday lives by getting out and about independently. We can provide solutions that match the needs of people with a disability, and help therapists achieve the best outcomes for every client, in every age bracket. Astris PME have a huge range of trial equipment available so if you would like to make an appointment with one of our Specialist Consultants or enquire about any of the products and services we offer, please call us. We will be happy to help!

Ormesa

Resources and support

wellbeing and mental health for parents and carers

As parents and carers of children with disability we are particularly at risk of burnout - a state of emotional, physical, and mental exhaustion caused by excessive and prolonged stress. If you find yourself constantly feeling overwhelmed, stretched to the limit and in constant fight or flight mode, please take a look at the warning signs below.

Signs of burnout include -

• Feeling ineffective in all your roles

• Rage

• Tired all the time

• Always feeling like you’re in a bad mood Ignoring the signs of burnout could cause further harm to your physical and mental health in the future.

So, if you are heading to burn out city, what can you do?

Firstly, see your GP. Request a mental health plan and discuss options best suited to your circumstances.

Next, find support and resources that will build your skills and capacity to manage stress and future triggers. We’ve gathered information on some national programs that can help you immediately.

ENVISAGE

Best suited for: parents and carers of children between 0 – 8 with disability or a developmental concern; includes a dedicated First People’s program ENVISAGE Families initiative is a FREE peer support program that empowers, supports, and connects Australian parents and anyone in a caregiving role raising children aged 0-8 years with disability or developmental concerns.

The free program can be undertaken through five face-to-face or online interactive workshops and discussions. The workshops cover important areas such as health and well-being in early child development; child, sibling, and family development; parenting values and child-caregiver relationships; self-care and wellbeing for caregivers; and techniques for communicating, collaborating and connecting.

ENVISAGE workshops are facilitated by a clinician or early child development professional with experience working with families with children with disability

or developmental concerns AND a caregiver with lived experience who is trained in providing peer support. envisage.community

Please note this program is funded until June 2025

HEALTHY MOTHERS, HEALTHY FAMILIES

Best suited for: mothers and female carers of children with disability

Healthy Mothers Healthy Families is a health education and empowerment program for mothers of children with disability. The mission of the program is to support, empower and encourage mothers of a child with disability to learn about, and create a healthy lifestyle that fosters their own health and well-being, alongside a healthy, happy family life. There are 10 modules to complete which can be selfpaced or part of an online workshop. healthymothers-healthyfamilies.com

If you are a parent living with a mental illness, you are not alone. The National Study of Mental Health and Wellbeing showed 3.4 million or 17% of Australians aged 16–85 years had accessed a health professional due to mental health concerns during 2020–21.

EMERGING MINDS FAMILIES

Best suited for: parents and carers of children with disability including professionals that work with families

Emerging Minds develops mental health policy, interventions, in-person and online training, programs and resources in response to the needs of professionals, children and their families. Resources include supports and information for parents experiencing mental illness to understand the importance of staying connected, talking to their children and maintaining routines. emergingminds.com.au/families

WORKING OUT DADS

Best suited for: fathers and male carers of children with disability

Working Out Dads is a FREE online group for dads raising young children with developmental delay or disability.

Parents & Carers

IMPORTANT RESOURCES

Lifeline

24/7 crisis support and suicide prevention service.

13 11 14 or Text on 0477 13 11 14 lifeline.org.au

Mensline

24/7 counselling service for men.

1300 78 99 78 mensline.org.au

Beyond Blue

24/7 mental health support service

1300 22 46 36 beyondblue.org.au

headspace

Online support and counselling to young people aged 12 to 25.

1800 650 890 (9am to 1am daily) headspace.org.au

Kids Helpline

24/7 crisis support and suicide prevention services for children and young people aged 5 to 25.

1800 55 1800 kidshelpline.com.au

Dads come together once a week for a group discussion, plus a guided workout with a personal trainer!

The Working Out Dads is a research project by the Murdoch Children’s Research Institute and Tweddle Child & Family Health Service. The aim of the project is to gather data on whether fathers of children with additional needs or disability find Working Out Dads acceptable, and explore fathers’ satisfaction with the program.

Register here: redcap.mcri.edu.au

5 WAYS TO WELLBEING PROGRAM

Best suited for: all parents and carers

‘5 Ways to Wellbeing’ introduces you to five simple and effective ways to improve your psychological and emotional health that are based on extensive international research.

Register here: 5waystowellbeing.org.au

1800RESPECT

24/7 support for people impacted by sexual assault, domestic violence and abuse.

1800 737 732

1800respect.org.au

Suicide Call Back Service

24/7 crisis support and counselling service for people affected by suicide.

1300 659 467 suicidecallbackservice.org.au

QLife

LGBTIQ+ peer support and referral. 1800 184 527 (3pm to midnight daily) Online chat 3pm to midnight daily qlife.org.au

13YARN

24/7 crisis support for Aboriginal and Torres Strait Islander people.

13 92 76 13yarn.org.au

Q&A DADS and disability

DADS and disability

What are some of the biggest challenges you face as a dad of a child with disability, and how do you navigate them?

Parenting is never easy and when Archer was born, our eldest, Luca, was almost one year old. With Archer’s birth, my wife and I immediately realised that the goal posts had shifted. Archer sounded different, the emotion was different, and the medical team behaved in a totally different manner. Not everyone embraces

change and unfortunately, I am one of those people. For me, the biggest challenge was being able to adapt. Adapt to a new norm. Now, when I mention adapting, I’m not only referring to the challenges that present with navigating a disability, but also those associated with tempering my own expectations and adjusting my own parenting style. To this day, I navigate this by trying to remain rational, reasonable and possessing patience. I’m still a work in progress!

Dan is dad to 2 boys, including Archer who has Coffin Siris syndrome. We sat down to chat about his insights and experiences on raising a child with disability and what he’s learnt so far.

Parents & Carers

How do you balance the needs of your child with a disability with the needs of your other children?

As parents, this is the $10,000 question. Wherever possible, we try to incorporate both boys into each other’s lives and participate in activities as a family. For example, although he doesn’t partake in the actual games, Archer is a part of Luca’s footy team, attending games and joining in the team song. And Luca is more than happy to participate in his brother’s various therapies and assist with both the physical and mental challenges they entail. A highlight of Archer’s social calendar are frequent camps either with “Flying Fox” or “People Outdoors”. These occasions give Luca the chance to throw himself into whatever his heart desires and experiences that may otherwise be difficult to organise when Archer is around. Both boys have been on camp together which was a great experience for them. This also offered respite to my wife and me –something that can’t be understated!

How do you prioritise and maintain your own well-being and emotional health while caring for your

child?

As I get older, I realise that this is a massive priority. When Archer was born I found myself somewhat overwhelmed and obsessed with the need to navigate a totally foreign landscape. We were starting from scratch and my overall well-being was not a priority. As a result, my physical health deteriorated, my mental health suffered, my social life diminished and the consequences were detrimental to my marriage. I won’t say that I had an epiphany, but over the journey I realised that change was needed. So, I visited my local GP and sought help from a mental health practitioner. I have now reduced my drinking, become more physically active, practice mindfulness and frequently catch up with friends for dinner.

How do you prepare your child for independence and adulthood?

I anticipate that Archer will remain with me for the rest of my life, nonetheless we continue to nurture his independence in a variety of ways. Where possible, Archer is treated no differently to his brother and assigned tasks commensurate with his capabilities. This includes day to day duties such as setting the table, making snacks, folding the clothes and tidying up after himself. Personal hygiene is also a major focus and is incorporated into most facets of our daily routine. Archer is very literal and finds it difficult to conceptualise things (such as the value of the dollar or ability to identify hazards) - there is still so much to learn, but our ultimate aim is to arm him with the requisite skills required to navigate some of life’s most basic functions.

What are your biggest fears for your child and how do you manage those feelings?

No doubt my biggest fear relates to Archer’s mortality. Archer has CoffinSiris Syndrome which is a rare genetic syndrome and is inherently linked to a great deal of medical uncertainty. My other fear is Archer being endangered or exploited due to this syndrome. To manage this, I do what I can to ensure that Archer is always in a safe and secure environment. To placate the emotions attached to this, I have learned to utilise the aforementioned coping mechanisms; the assistance of mental health practitioners, the semblance of an exercise regime, less alcohol, the utilisation of carers and support networks (which affords me time to reflect and reset) and more positive social interaction.

What advice would you give to other dads who are new to parenting a child with disability?

Confucius said, “the green reed which bends in the wind is stronger than the mighty oak which breaks in a storm”. Stormy times may be ahead. Be the reed and adapt every aspect of your life to whatever situation presents. Be flexible whenever possible, as things don’t always go to plan.

What are some of the most rewarding moments you’ve experienced as a dad?

For me, the most rewarding moment is the present moment and the journey that got me and my family to where we are today. Both my children are amazing young humans that possess an innate ability to enrich not only my life, but the lives of the people they encounter. Regardless of abilities, this is what I always hoped to achieve as a father. So long as my boys continue to make the world a better place by contributing to the community in a positive manner, my work is done.

What resources and support have been most helpful to you in your journey as a dad of a child with disability?

Despite its flaws, we are blessed to live in a country that has a NDIS designed to assist those who may not necessarily be able to support themselves. Any support is good support and the introduction of the NDIS has afforded Archer access to services and opportunities that he otherwise may not have received. Finding and maintaining access to the most appropriate and well-suited disability support workers has proven to be a Godsend. I now view them as an extension of my own family and they are just as invested in Archer’s future as we are.

Regardless of abilities, this is what I always hoped to achieve as a father.

I won’t say that I had an epiphany, but over the journey I realised that change was needed.

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Atlas McNeil Healthcare brings customers choice and peace of mind for all their Health and Home Care product needs - delivered direct to home, Australia-wide.

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Lachlan is 6 years old and has Fragile X syndrome, an intellectual disability that causes significant developmental delay. Because of this he still uses nappies and other continence products. Atlas McNeil Community was recommended by a friend whose son also has Fragile X syndrome. We couldn’t be happier with the service, the sales team are efficient, ordering is simple, and our products arrive at our door within days. Their huge product range covers all of our son’s needs, from nappies to mattress protectors, disability swim shorts, bed pads etc. I’m very glad we chose Atlas McNeil Community.

Discretion by design

Co-parenting AND AUTISM

AND AUTISM

Co-parenting can be a challenge at the best of times for reasons both in and out of our control. A lack of time, resources, clear communication, and compromising can create situations where parents and children feel overwhelmed, ignored or isolated, especially when you add autism to the mix.

When it comes to autism and co-parenting, there can be some additional challenges that everyone involved needs to consider. Many autistic people find changes to their lifestyle and day-today routines stressful and overwhelming, especially when they’re unexpected. They may have a delayed or particularly intense reaction to the separation of their parents, as well as situations like meeting their parent’s new partner or moving between houses. It may also be difficult for autistic children – and autistic parents – to find and maintain therapies and support services that suit their new and ever-changing circumstances.

Although co-parenting and autism can be a tricky combination, it’s important to remember that you’re not alone. Plenty of parents have walked this road before and are successfully navigating co-parenting, single parenting, and other parenting arrangements today. We’re going to take you through some tips for autism and coparenting, as well as share the firsthand experiences of parents at different stages of the journey.

STARTING ON THE JOURNEY

A successful co-parenting arrangement doesn’t appear overnight, especially when it involves people on the autism spectrum. Co-parenting situations are often evolving constantly to suit the changing needs of those involved, with this being especially

true at the start of the journey as you discover what works and what doesn’t. Autistic people may react differently to non-autistic people when it comes to changes such are as the separation of their parents or moving to a new house. Whether it’s a delayed reaction, a more intense reaction or a less intense reaction than you’d expect, it’s important not to be judgemental and to support them as best you can. Where possible, ensure changes to that person’s therapies, supports and day-to-day routine change are as gradual and minimal as possible, and anticipate some extra support may be needed in those early days.

A MUM’S AND DAD’S PERSPECTIVE

Many parents of children with autism or disability are single parents. For single parents, it can be particularly difficult to navigate the challenges of autism such as meltdowns, school refusal and burnout, as well as juggling therapies and supports alongside other commitments. Jo Abi, a journalist at 9Honey, spoke to us about her experience as a single mother to three autistic young people:

‘Parenting autistic children as a single parent is much easier than parenting autistic children with an unsupportive partner. I learned this the hard way, and I tried and tried to improve the situation, but I simply ran out of energy. Every spare droplet of time and energy was spent advocating for my children, and I

just couldn’t face having to do it at home. Leaving was terrifying, but it came with a period of peace for both me and the children. Now we can relax in our home, and the challenges are ‘out there’ not where we live. My ex-husband has come a long way since then and does his best to provide for and support the children, but for some reason that didn’t happen until recently.

I wouldn’t have it any other way and didn’t date after my divorce because I didn’t want to risk the carefully established harmony we were enjoying, but I do have a partner now who is also autistic and understands, but at the end of the day these are my children to raise, and I feel like I am doing a good job of it.’

Information, resources and support for fathers of autistic children can be few and far between, with many dads finding the parenting experience quite lonely. Rob Anderson, an autism parent, shares his advice:

‘As a dad you can feel your job is to fix things. I’ve felt for much of the time, I’ve been failing as a parent. In this new reality you have to come to the understanding that there is a lot that you’re not going to be able to control. I now accept that parenting is going look different and realise I need to be a dad that that doesn’t have fixed expectations and is open to new learnings every day.’

CO-PARENTING WHEN ONE OR BOTH PARENTS ARE AUTISTIC

Contrary to popular belief, many autistic people have relationships, marriages and children, sometimes only realising

‘Parenting autistic children as a single parent is much easier than parenting autistic children with an unsupportive partner.

they’re on the autism spectrum when their children are diagnosed. Autistic adults can also struggle with major changes such as separation and divorce and may need additional support to ensure they can continue caring for themselves and their children.

Some tips that may help autistic parents navigate co-parenting include:

• Work with who you’re co-parenting with to create a clearly structured schedule that you can all stick to. Ensure this schedule meets the needs of everyone involved.

• Examine your current schedule and identify activities that cause little stress, some stress and high stress. Then, adjust your schedule to ensure that you have as few high-stress activities as possible, and those that you can’t avoid are spread out with recovery time in between.

• Follow any stressful tasks or commitments with low-stress or relaxing activities. For example, if you have to take your child to a shopping centre where it’s incredibly noisy and busy, head straight to the comfort of your home afterwards and unwind.

• Continue to communicate regularly with

who you’re co-parenting with to ensure your routine still meets your needs and the needs of your children.

YOUR NEXT STEPS

Co-parenting can be difficult on the best of days, so remember to be kind to yourself, especially when things are difficult. Bad days don’t last forever and there’s always someone who can help and relate, even when it doesn’t feel that way. For more free and evidence-based support for people in the autism community, visit autismawareness.com.au and autismwhatnext.com.au.

Diagnosis:

FRAGILE

Fragile X syndrome is a genetic condition that causes intellectual disability and developmental delay, as well as behavioural and learning challenges.

Around 1 in 5,000 people have Fragile X syndrome. Therapies, such as OT and speech therapy, and the right supports in educational, community and workplace settings will encourage independence and ensure the best outcomes in daily living for children and adults who have Fragile X syndrome.

The diagnosis can cause various challenges for daily living, and its effects will vary from person to person. Males and females are affected differently. Fragile X is an X-linked condition, carried on the X chromosome. Males have one X chromosome, and females have two X chromosomes. The presentation of Fragile X syndrome in females may seem less pronounced than in males due to the ‘balance’ of having an unaffected FMR1 gene on their second X chromosome. While a wide range of characteristics are associated with the syndrome, a person may only experience some of these. They include developmental delay and learning challenges, as well as social, language, attentional, sensory, emotional, and behavioural difficulties. Autistic behaviours and autism spectrum disorder

Fragile X Awareness

Day 22 July

are associated with Fragile X, as are low muscle tone and difficulties with fine and gross motor skills. Anxiety, including social anxiety, is also a very common trait, and so behaviour and communication in social settings can present a challenge.

STRENGTHS

People living with Fragile X syndrome have many strengths. They are often empathetic and sensitively aware of the feelings of others, have a friendly and sociable nature, and a good sense of humour. The unique learning style associated with Fragile X includes excellent visual memory, good long term and incidental memory, and capacity for imitation. Capitalising on these strengths is an opportunity to help develop skills in daily living and learning.

HOW FRAGILE X IS PASSED ON

Fragile X syndrome is caused where a change (expansion) occurs in an individual’s Fragile X gene (called the FMR1 gene). This expansion of the FMR1 gene restricts the production of a protein which is essential to normal brain development, resulting in developmental delays and other characteristics associated with Fragile X syndrome. The gene change associated with Fragile X syndrome is passed on through a female parent, who is a carrier of Fragile X.

It is estimated that about 90,000 people in Australia are impacted by Fragile X –as female or male carriers of Fragile X, or living with Fragile X syndrome.

OBTAINING A DIAGNOSIS

Fragile X syndrome is diagnosed by a DNA test of a blood sample or a saliva sample. A confirmed diagnosis can ensure a child receives early Fragile X-specific supports for language development, physical or occupational therapy and in other areas.

A GP, paediatrician or clinical genetics service can order the test and the results are usually available within several weeks. In certain circumstances where the person being tested has intellectual disability, or has a relative with the Fragile X premutation (a carrier), the cost of this testing will be covered by Medicare.

DNA testing for Fragile X syndrome is recommended to be included as part of a basic medical genetic assessment where a child has intellectual disability or developmental delay. GPs or paediatricians will also generally recommend a Fragile

X test for a child who has a diagnosis of autism spectrum disorder, as Fragile X is thought to underlie up to 1 in 20 cases of autism (6%).

Genetics services can provide genetic counselling to parents and may recommend Fragile X testing to other family members.

Advances in the availability of testing for Fragile X are on the horizon. Reproductive genetic carrier screening for Fragile X will be reimbursed by Medicare from November 2023. It is hoped that in the not-too-distant future Fragile X syndrome will be included in the newborn bloodspot testing program as the Federal Government looks to add more conditions to this screening.

TREATMENTS / THERAPY

While there is as yet no specific targeted treatment for Fragile X syndrome, there are a range of treatment interventions and management strategies to target symptoms of Fragile X that can be of great benefit. Early and ongoing interventions provide the best outcomes and therapies and management strategies are helpful lifelong. A multi-disciplinary approach tailored to the individual would incorporate educational, medical and behavioural management techniques and therapies. An integrated approach would include a range of specialists:

• GP and / or developmental paediatrician

• Occupational therapist

• Speech and language therapist

• Behavioural psychologist

• Psychologist

• Physiotherapist

• Special education support

• Other medical specialists may include a psychiatrist and neurologist. Clinical trials are underway internationally and in Australia to investigate treatments that target specific characteristics associated with Fragile X syndrome, such as anxiety, so the future for targeted treatments for symptoms associated with the diagnosis looks hopeful.

Fragile X Association of Australia –provides information, counselling, peer support and educational videos/webinars, referrals to health professionals.

HelpLine; 1300 394 636 or support@fragilex.org.au fragilex.org.au

Family stories Living with Fragile X

Our family is Lisa and Michael and our 4 children: Dylan (11), Braden (8), and twins Marcus and Lucas (5). I am a Fragile X carrier and so is Dylan. Braden and Lucas have Fragile X syndrome.

Braden was born with a condition called Pierre Robin Sequence, which led to major complications at birth (breathing difficulties, cleft palate). He pulled through but was plagued with delays & missed milestones – he was non verbal until he was 3.5.

The day before his 3rd birthday his younger brothers were born. Marcus was fine, but Lucas had problems from day one. At 6 months he wasn’t meeting any milestones, and we noticed he had a complete oral aversion. We asked the genetics department for family testing, two children with major problems couldn’t be coincidence! Later on a new speechie for Lucas asked if he had been tested for Fragile X syndrome as he had similar quirks to FX kids. I googled and realised that this was definitely Braden. The genetics department then reluctantly tested Lucas’s samples for

Fragile X and months later confirmed the diagnosis.

The beginning of a diagnosis is hard, but I can tell you it gets better; you adapt, and you concentrate on all the positive things and all the things you can do to help your child have the best future they can possibly have. It’s a hard journey but creating a support network around you is key.

Braden and Lucas are both in learning support units at school. Dylan has just been confirmed as having ADHD along with learning disabilities, and is on waitlists for speech and OT. Braden and Lucas also have low muscle tone and are hypermobile, so along with OT and speech they also both have physio.

In terms of the boys’ future, I try not to think about it too much, and take each day as it comes. You just don’t know with our FX kids how life is going to pan out for them. To be able to advocate and support them as best I can is all I can hope for in the future.

Written by: Lisa Macdonald-Holmes

Lucas

Braden

We took Joshua to a specialist paediatrician when he was 18 months old as he had begun to show some behavioural and language problems compared to his peers. In that initial assessment Joshua was diagnosed with Autism Spectrum Disorder, with further genetic testing finding that he has Fragile X. Since his diagnosis he has done speech therapy, occupational therapy, and psychology sessions. He had become nonverbal around his initial diagnosis so speech therapy has been a constant in our lives. He is now a very chatty kid, is engaged with the world around him, and has a great sense of humour. He also does travel training, supported by an excellent support worker, and has recently started catching the bus by himself which is really exciting for us all.

The advice we’d give to other parents that have had a new diagnosis is:

• As hard as it is in those early days it will become easier.

• Support the people around you - it can be difficult to get your head around the diagnosis and this can happen at different speeds for different people.

• If anyone offers their help take it.

• Contact the local association of the condition and connect with their staff and other parents - they will have some great suggestions on therapists, schools, treatments etc.

Find good allied health workers - they will be working with you as much as they are working with your child.

Joshua is now in year 10 at St Lucy’s in Sydney which he loves. The school supports children with different disabilities and they really understand his needs and how to get the very best out of him.

To relax we love taking the dog to the beach and getting out and seeing Sydney on the bus/ferry/tram and train. Josh loves his public transport adventures!

We are really excited to see what Joshua wants to do after he finishes school. We are working with his school and allied health team to help build the skills he needs to succeed and have as independent a life as possible.

Written by: Adam Lawrence-Slater

We are Adam, Charlotte and our 16 year old son Joshua (and Snow, the dog.)

Ask a PLAN MANAGER!

Everyone

RESPITE CARE

How does respite care under the NDIS work for children and teens?

Respite care allows for both a child with disability and their parent/carer to have a break or a change of scenery.

Under the NDIS, respite care is usually referred to as ‘short term accommodation’. For children or teens, the NDIS may fund short term accommodation if they require more support than other children their age. In some cases, the NDIS may fund alternative supports instead such as in-home support.

What types of short term accommodation/respite care does the NDIS fund?

Respite care is generally funded for up to 14 days at a time, for a maximum of 28 days per year.

It can be used for a variety of purposes including:

• A chance for your child or teen to build independence.

• A place for them to make new friends or develop new skills.

• To give parents, carers, family members or other informal supports a break.

It’s intended to be funded as a group support, unless there is evidence your child needs individual support because of their disability.

Does respite care cover food costs and other expenses?

The funding for respite care covers all basic expenses in a 24-hour period related to providing the service including:

• Personal care

• Food

• Short term accommodation

• Overnight support

• Negotiated activities.

Keep in mind that the NDIS doesn’t fund the cost of entry fees or spending money for additional activities.

Is respite care available for short periods of time, such as overnight or a couple of hours?

Yes. If the respite care required is for less than 24 hours, it may be possible to negotiate a reduced rate with the provider.

Examples include dusk to dawn respite or support for a few hours during the day that is not covered by other NDIS supports such as Social and Community Participation.

These short-period respite arrangements are typically charged as an hourly fee and subject to the maximum hourly rates set by the NDIS for in-home and out-of-home assistance.

Do I need to specifically ask for respite care at my child’s planning meeting?

Yes. If you’re preparing for your child’s first plan meeting or plan reassessment, it helps to consider in advance how much funding may be needed for respite and discuss this in your child’s plan meeting. Things to think about:

• Are there regular times when you/ your child’s carer are unavailable? If so, document these including the length of time and regularity.

• Do you/your child’s carer have any holidays or breaks planned in the foreseeable future?

• How respite care can be used to help look after the long-term wellbeing of your family.

• How respite care might help your child or teen achieve their goals (such as trying out what it is like to stay with other people or developing their independence).

It’s worth noting that if your child or teen has Core supports in their NDIS Plan, you can use it to fund short term accommodation if it helps them to achieve their goals and meets the usual NDIS reasonable and necessary requirements.

The friendly crew at Leap in! plan management, many with lived experience themselves, are highly experienced in supporting families to make the most of their child’s NDIS Plans. Leap in! plan manager, Tabitha answers some common questions about respite care and the NDIS.

What happens if something changes during my child’s plan and we need additional respite time?

If there is funding in your child’s Core budget, you can use this to pay for short term accommodation as long as it relates to your child’s disability needs.

If there isn’t enough funding in your child’s NDIS Plan to cover reasonable and necessary additional respite time, you can ask for a plan reassessment.

The NDIS may fund more than 28 days in a year for children at risk of going into residential care, but will not fund more than 30 days at a time or more than 60 days a year.

Will the NDIS pay for a holiday for my child?

Short term accommodation is not intended for holidays and should be related to your child’s disability, such as for respite or improving their skills.

If you are planning a holiday with your child, other NDIS supports may be available for assistance with paid supports or care for your holiday. Generally, it will not cover holiday accommodation or entry to attractions.

Call Leap in! on 1300 05 78 78 or email crew@leapin.com.au to speak with a team member experienced in the NDIS and early childhood approach.

DO YOU HAVE A QUESTION YOU’D LIKE US TO ANSWER IN THE NEXT EDITION OF SOURCE KIDS? WE’D LOVE TO HEAR FROM YOU. SEND YOUR QUESTION TO MYSTORY@LEAPIN.COM.AU

needs a break from time to time. Respite care under the NDIS can provide children and teens with disability and their parents/carers an opportunity to have a break or a change of scenery.

RSD & RDF

Reward Deficiency Syndrome

AS CHARACTERISTICS OF AUTISM AND ADHD

I found myself saying “there are two primary motivators behind personality in Autistic / ADHD (“AuDHD”) children and adults”. Technically all AuDHD’ers have a combination of both of these motivators, but more often than not, one motivator is stronger than the other and thus becomes a primary motivator of behaviour.

One is called “Rejection Sensitive Dysphoria” (RSD) and the other is called “Reward Deficiency Syndrome” (RDS). The following is the subject of work and thoughts from two people – one with each of the profiles explained throughout this piece.

REJECTION SENSITIVE DYSPHORIA (RSD)

By Amelia Kent (AuDHD - Rejection Sensitive Profile)

The experience of RSD is explained by those with this profile to be an incredibly high registration of emotional interoceptive input, to such an extent that the feeling of rejection is often traumatic. This is then said to lead to those with RSD navigating the world in a constant effort to avoid rejection, leaving them hyperaware and hypersensitive to any situation or interaction which could cause them to experience this trauma.

As RSD'ers are so significantly impacted by rejection, which is largely out of our control, to allow ourselves a sense of safety, we often attempt to assert control over as many areas of our life as possible. This can manifest as a variety of ways, however, commonly presents as:

Pathological Demand Avoidance (PDA): This is a fear-based avoidance of demands which often looks like the person is being oppositional. The oppositional nature often occurs due to deep-seated fears of being placed in a situation they

cannot control or navigate, thus saying ‘no’ or avoiding the demand is the default first response.

Obsessive Compulsive Disorder (OCD) and/or Generalised Anxiety

Disorder (GAD): This often presents as a result of perfectionist-based intentions and a desperation to get it right/perfect. There is a constant internal dialogue in the brain of the RSD’er that “they will hate it –this is not good enough”. This is exhausting and requires excessive strength to battle.

REWARD DEFICIENCY SYNDROME (RDS)

By Tara Kent (AuDHD - Reward Deficiency Profile)

Those with RDS profiles describe having an intense drive to access dopamine constantly. This profile is more commonly referred to as ‘dopamine seeking’ rather than ‘reward-driven’ to avoid the assumption that reward-based strategies are helpful. Reward-based strategies are very unhelpful and result in further increases to anxiety from an “it’s never enough” experience of the dopamine-seeking brain that these strategies are often used on.

Interventions & Strategies

Here are some basic strategies to start facilitating the roadmap towards supporting RDS and RSD brains to authentically thrive.

RDS brains thrive on outcomes and intellectual stimulation. Amongst other things, this can be provided by devices, with their fast-moving games, shock-value from the impact of their behaviour on others and achievement & completion, due to the subsequent dopamine gained. RDS’ers will often complain that they don’t want to do an activity alone, making them appear rejection sensitive – however, as different to the need to acquire validation and nurturing (as the rejection sensitive brain requires), the RDS brain doesn’t find value in many things unless someone can see their wins, or they have another tangible way to display the outcomes.

Due to this constant effort to meet a basic need, RDS'ers will often be solely focused on their interests, and achieving whatever goal they have set for themselves, at times disregarding the needs and desires of those around them. Engaging in any task or activity that contains no perceivable dopamine is likely to be incredibly difficult and can cause the RDS’er to experience significant dysregulation as a result. This can often present as what many see as a Pathological Demand Avoidance (PDA) profile, or sometimes call Oppositional Defiance Disorder (ODD), however, RDS’ers can often manage demands as long as such demands do not interfere with their pursuit of dopamine.

Rejection Sensitive Dysphoria (RSD)

Be consistent with the excitement and validation that is provided. You may think that taking a weekend away with only this one child will help form a better connection, however, you will notice upon return that you’ve now set a new level of ‘normal’ regarding your connection. You’ll then find this unmanageable, yet the child may expect this all the time and feel betrayed and unloved when you’re too busy to provide that intensity of emotional connection.

Where possible, have difficult conversations over text/ email, from different physical locations (even different rooms of the house). Communicating through messages is often really helpful for RSD'ers, as it allows us to process our emotions and the content of the message before responding. It also removes the layer of us overthinking the other persons tone of voice, facial expression, and body language. We can then take the time to plan and carefully word our response.

1 1 2 2 3 3

Don’t mix praise with constructive or negative feedback. If there are any constructive or negative comments, this will subsequently overwhelm the person and they will hyperfocus on this and totally lose any benefit of praise. Provide praise at a later time and never link it to anything negative.

Reward Deficiency Syndrome (RDS)

Try to remember that these brains are driven and focused, and don’t always realise that their tunnel vision might be hurting or offending those around them. Help them see the outcomes of decisions they are making, so they can see the dopamine they will lose if they do certain things. They are not nasty in intention, they are just so driven to access dopamine that they sometimes miss things.

If you are trying to stop obsessive fixations (such as needing to get someone off a device to eat / participate) use another source of dopamine, not a direction. Being excited about something that they will like and talking about it and starting a new, preferred activity is far more likely going to help them transition. Telling an RDS brain to stop accessing dopamine is not going to achieve an outcome unless they are scared or have another source of dopamine to transition to.

Speak in outcomes or your instructions are ‘white noise’ to the person and not heard. Rather than “don’t run with your fidget toys”, say “you’re about to drop and lose your fidget toys”. The outcome provides the instruction, without using a direction.

Tara and Amelia are both Specialist Behaviour Practitioners and Directors at Instinct Au and DivergAntz Collective, as well as The Experience Collectors. None of these providers use Applied Behaviour Analysis in their work, instead using neuroscience and sensory based strategies to achieve outcomes. They work in a manner which is Autistic led, Neurodivergent Affirming and listens to Actually Autistic voices.

Functionality and fun The Zing is a win for Ava and her mum

That’s certainly been the case for New South Wales five-year-old Ava Ryan, who recently received a Zing Multi Position Stander from the team at Dejay Medical.

Ava has a chromosomal deletion and GRIN2A - genetic conditions that have caused severe global development delay, hypermobility, and bilateral profound sensorineural hearing loss.

Purchasing the Zing MPS TT stander from Dejay’s Easystand range has given Ava a new perspective both physically and socially, according to mum, Michelle, and dad, Josh.

It’s also been a leveller when it comes to spending time with her big brother Will, 7.

“Ava’s stander has helped her to be included in our family activities and because she is not working hard on standing, Ava can engage more with those around her,” Michelle says.

“When in the stander Ava loves to have squigz (tiny suction toys to develop motor and sensory skills) stuck all over the tray to pull off and throw – she also loves playing “peek-a-boo” with different pieces of fabric over items or people’s faces.

standing position and use furniture to support her movements, she locks her joints as a result of her hypermobility.

“This doesn’t enable her leg muscles to develop the strength they need to allow Ava to stand independently without holding on to something. The standing frame enables us to put Ava in a position she loves whilst not locking out her knees and ankles – this means she is having fun and strengthening her muscles at the same time!”

Ava uses the stander every day at home, typically in the lounge room where she’s being encouraged to watch more television - a problem many parents don’t have!

“Ava also loves watching her brother dance and sing while in her standing frame – she thinks he is very funny!”

The stander allows Ava to stand in the correct position for longer periods with her hands free to play.

“This helps Ava work on standing and play skills at the same time. Being at eye level helps Ava work on social and communication skills with less body fatigue.”

While Ava can pull herself up to a

“She is at the perfect height for watching TV! I know this is not something we would usually want kids to do more of, but Ava doesn’t have much interest in TV yet and we think it would be a great tool to improve her concentration and give mum and dad a break for a few minutes!”

Ava attends preschool two days per week but is reliant on her family and support network for all aspects of her care and has a “fabulous” team of therapists that support her.

“Ava loves being around familiar people and being outside. Her favourite things to

“Ava also loves watching her brother dance and sing while in her standing frame – she thinks he is very funny!”

It’s a win-win situation when you can combine having fun and increasing socialisation skills with enhanced muscle strength.

do are visiting the park to go on the swing and slide and going to Frame Running in Wollongong on a Monday night,” Michelle says.

Ava’s family highly recommend the Zing stander and the support they received from Dejay Medical - long time supporters of new and innovative ways to promote active inclusion by providing specialised wheelchairs and supports, handcrafted in New South Wales.

Easystand Standers provide a broad range of solutions to meet each person’s goals with each model tailored to every customer’s unique personal needs.

The Zing range of standers are the only multi-position stander that pivots two directions, allowing the unit to go from flat-to-load supine to 20 degrees prone in one motion. There is no need to transfer the user in and out, flip pads, foot plates and trays. This ability provides a therapeutic opportunity not possible with other standing frames.

The Zing MPS TT – as used by Ava also features the tilt-table style padding with easy-to-use positioning straps included on the knees and hips.

But Ava’s story best sums up the benefits of a Zing stander.

“Our main goal for Ava is for her to be happy. Ava loves to move around and explore and loves being around familiar people, she is a very social little girl,” Michelle says.

“We want to help Ava to be able to navigate her environment more easily, by standing to see people around her and engaging with them and by being able to move around more easily.”

A free trial can be organised by emailing therapy@dejay.com.au. The full range of standing solutions can be seen at dejay.com.au/product-category/standers

AVOIDING BURN OUT by focusing on what works

SO HOW DO WE INTEGRATE THIS?

I find a lot of parents who have children with disabilities have an insurmountable list of tasks. So, having another ‘thing’ to do can add to the overwhelm, and is unable to get done.

Ask yourself the following -

• How you best function, and what works best for your household. For example, do you prefer whiteboards, or an app on your phone?

• Choose a medium, then create 4 to-do lists - one for each of the aforementioned quadrants.

If there are two parents who each are involved in managing their child’s disability, then make sure both parents have access to the format you choose.

It can be incredibly easy to be overwhelmed by all the things you need to do. Instead of one long list, make quadrants.

For each item, decide on its urgency and importance.

1. Address the ‘urgent and important’ first. These are the important emergencies. This is not where you want to live your life. However, these need to be urgently addressed (and prevented).

2. Then the ‘not urgent and important’. This is the planning, organisation and scheduling.

3. Address the ‘urgent and not important’. These are interruptions. They are someone else’s emergency. They are not YOUR important tasks!

4. Lastly, address the ‘not urgent and not important’. These are just distractions.

If a therapist provides activities, homework, or parent coaching, ask them the same questions “I’m wanting to add this to my to-do list. To make sure I have this is in the right spot, can you let me know how important &/or urgent your advice is?”

To help you remember everything, you can ask your therapist to write down their advice in an email or a piece of paper during the session. Even better, you can pull up your to-do list and write it directly on the list during the session.

When you feel like you’re missing something, you can even pull out your to-do list, and ask “This is my list of things to-do. Is there anything missing?”

By compiling and segmenting tasks, you can prioritise and gain some headspace back!

FB: @EngageOT

IN:@engageoccupationaltherapy

By Ashlee McDowell

OT and Mental Health specialist Ashlee McDowell from Engage Occupational Therapy provides some strategies to help minimise the stress we feel from the mental load of a never-ending to-do list.

TIP

At times paper to-do lists, although easy to update, can quickly become messy and visually overwhelming. Electronics/ apps create a clean list to easily update.

approach to disability support?

Australia’s only service for directly employing Disability Support Workers.

How it works:

1. You find people suitable for your support needs and determine their pay rates

2. We take care of all the admin, such as police checks, and onboard them as your employees

3. You simply approve and submit your Support Worker timesheets and we take care of the rest!

4. We facilitate all your employer financial obligations, including super and tax, insurances and compliance

Noah & Ash

Music’s impact on wellbeing Music’s impact on wellbeing

Music is medicine. It helps us connect, communicate and express, heal, learn and belong. Music is humanity’s universal language - primal, timeless and inclusive. It offers children with disabilities, their families and their carers an expressive outlet and a host of wellbeing-boosting benefits.

Amidst relentless appointments and arduously long days, it can be practically and emotionally challenging to make space for parent-child or carer-child bonding. Music facilitates opportunities to nurture connection and lower stress. Because listening to or making music releases the “happy hormone” oxytocin, you’ll chemically build trust while enjoying a shared experience.

“When words fail, music speaks” - Hans Christian Anderson.

Through music, children can express themselves. Music aids communication skills, supporting speech, language and auditory processing. It creates a comfortable and natural avenue for neurodiverse children to learn and process information, and to communicate their needs, wants and emotions.

Playing instruments and or rhythmic activities can improve posture, balance,

coordination and physical control. Banging drums and action songs build dexterity, hand independence, and gross and fine motor skills.

Music engages the entire brain, making it the ultimate brain workout. It can help with sensory processing and cognitive function. Research has shown that music can stimulate the brain, improve memory, concentration and quality of life at any age. Many children’s songs are specifically designed to teach concepts such as counting, pairing and problem-solving.

Music has been proven to have healing properties. It is used clinically to manage pain and stress. Psychologist Daniel J Levitin, PhD, found that music improved the body’s immune function and reduced stress and pre-surgery anxiety more effectively than prescription medications (Trends in Cognitive Sciences, April 2013).

MUSIC AS THERAPY

‘Music therapy’ involves the use of various musical instruments, techniques, and activities to achieve specific wellness goals. In the context of disabled and neurodiverse children, music therapy is used to address a range of emotional, cognitive, physical and social needs, and has been shown to have immense benefits. In a study published in the Journal of Music Therapy, researchers found that music therapy improved communication skills, social interaction, and emotional regulation in children with Autism Spectrum Disorder (ASD). Another study published in the Journal of Intellectual Disability Research found that music therapy improved language skills and reduced anxiety in children with Down syndrome. Teachers and support staff are encouraged to participate in music therapy sessions to encourage skill-building and sustainable outcomes.

Music therapy is for everyone, regardless of ability. In a supportive environment, kids can develop social skills and build

“When words fail, music speaks” - Hans Christian Anderson.

friendships while exploring the foundations of conversation and social graces such as turn-taking and collaboration. Group music therapy sessions help establish a sense of belonging and community - a proven factor for longevity and wellbeing (Poulain & Herm, 2022).

MUSIC THERAPY IS EVERYWHERE

Structured therapy sessions aren’t the only way to access the therapeutic benefits that music provides. Incorporating the magic of music into your daily life can help manage

challenging behaviours, promote positive interactions and learning. Trying to teach a skill or concept? There’s probably a song for it. YouTube and streaming services are a great resource for free music. Triggered by transitions such as packing away, getting dressed, meal times or car rides? A song can help facilitate smooth transitions and present instructions in a gentle, inviting way. Lullabies are proven to lower heart rate and prepare your body for sleep. Dim the lights and pop on a lullaby playlist to cue the zzzz’s.

NOT JUST FOR KIDS

You can (and should) take advantage of music’s power to energise, soothe, focus and connect. Earphones in and volume up! Soak in your favourite tunes, explore new ones, and feel your mood shift. Sing! Even if it’s just in the shower. Dance! Even if it’s just in your bedroom. It is proven to disperse anxious energy, release endorphins and lower stress. Regulate your nervous system and quiet your mind with a musical sleep induction. Or, utilise music as a means to process emotions and fears. Try songwriting. Remember, it doesn’t have to be perfect or even for anyone else’s ears. Participate in group music. Drumming circles, choirs or bands provide community connection and respite, boost endorphins, and shift negative energy. Sound baths use resonant music vibrations in conjunction with meditation and/or yoga to alleviate worry and leave you awash with a sense of wellbeing.

While music won’t offer a cure-all, it is an elixir to holistically improve wellbeing. Inject a song into your day. Let your heart pulse to the beat of the drums. Take a musical chill pill. Music is medicine for the mind and soul… now, time for your daily dose!

By Leanne King (Lee)

Leanne King (Lee) is a writer and member of the ARIA Nominated children’s music group, TIPTOE GIANTS . Along with band members Meg, a music educator, and Vee, a registered music therapist, TIPTOE GIANTS creates inspiring, inclusive music for children to THINK, FEEL and GROW as individuals and within communities. Their upcoming album, Small But Mighty, has a therapeutic focus; a collection of original songs, mantras, poems and relaxation inductions. TIPTOE GIANTS is passionate about supporting the disability community, and performs regularly at SourceKids Expos across Australia.

Getting Your Driver’s License

A GUIDE FOR YOUNG PEOPLE WITH DISABILITIES

The first step in the process is obtaining a Learner’s Permit. This can be done by passing the Road Rules Theory test at the Department of Transport. For those with disabilities, the process may include additional steps and accommodations. For example, individuals with a vision impairment may need a medical certificate from an eye specialist, and those with epilepsy will need a certificate from their doctor.

This is a crucial step as it lays the foundation for further driving lessons and obtaining a full license.

The next step is an Occupational Therapy Driver Assessment. During this assessment, an Occupational Therapist will review your medical conditions, physical and cognitive abilities, and recommend any necessary adjustments or accommodations. This assessment can sometimes be self-referred or referred by a medical practitioner.

NDIS funding may be used for the OT Driver Assessment, or fees can be subsidised through Private Health Insurance. It’s recommended to speak with your support coordinator about a plan review to include this funding.

Some of the most common disabilities that may require accommodations when driving include vision impairment, hearing loss, physical disabilities, and autism. For people with vision impairment, it may be necessary to install special mirrors. For those with hearing loss, a special device that amplifies the sounds of other vehicles and sirens may be necessary. People with physical disabilities may require hand controls or other modifications to the vehicle to allow them to drive safely. For those with autism, it may be helpful to provide a calm, structured environment during driving lessons to reduce anxiety and help them focus on the task at hand.

After the OT Driver Assessment, the next step is to book driving lessons and log

Getting your driver’s license is an exciting milestone for many young people, but for those with disabilities, the process can be intimidating. However, with the right support and accommodations, anyone can learn to drive and become a responsible driver.

hours. NDIS funding can be used for these lessons with a trained instructor as long as the eligible funding is in place.

Regarding the practical driving test, accommodations will be made based on the individual’s needs. For example, individuals with physical disabilities may need special modifications to their vehicle, and those with cognitive disabilities may need extra time for the test or support from a mentor.

Getting a driver’s license is a big accomplishment for anyone, but for young people with disabilities, it’s even more meaningful. It gives them independence and freedom and boosts their confidence and self-esteem. With the right support and accommodations, young people with disabilities can reach their goal of getting behind the wheel and hitting the open road.

By Jarred Fred

JAMIE’S STORY

I am a support worker and recently I helped a young autistic man named Jamie (pictured right), who was nervous about undertaking such a process due to his learning difficulties, navigate obtaining his driver’s license.

Jamie was nervous from the beginning, and his nerves only increased when we practised the Road Rules theory test before obtaining his learner’s permit. Despite practising, he struggled with the questions and nearly gave up on getting his license. But I was there to encourage him and help him through each step. Online, 11 quizzes can be done to prepare for the test to get your learner’s permit, and Jamie and I did all of them.

After he obtained his learner’s permit, Jamie underwent an Occupational Therapy Driver Assessment (OT Driver Assessment), which reviews the individual’s medical, physical, and cognitive abilities, and recommends any necessary adjustments or accommodations. For Jamie, the assessor thought he would benefit from a specialist driving instructor that would cater to his needs.

We set Jamie up with a specialist driving instructor who was familiar with working with autistic individuals with learning difficulties like Jamie. The instructor was patient and understanding, which helped put Jamie at ease. Sadly, Jamie was unable to do these lessons through his NDIS plan as he did not have the eligible funding, but his mum was more than happy

to help with the payments.

Jamie’s driving lessons were tailored to his individual needs, with a focus on building confidence and developing good driving habits. The lessons were conducted in a calm, structured environment, which reduced Jamie’s anxiety and helped him focus on the task at hand. In only a couple of months, Jamie had done all the hours required for him to do his driving test.

When it came time for the practical driving test, we first met with the assessor at the Department of Transport. The instructor ensured Jamie had all the necessary accommodations, such as extra time for the test and a calm, structured environment to reduce anxiety and help Jamie focus.

Like many people who did the driving test, the first two times, Jamie was unsuccessful. He found that he would get so nervous that he would start shaking. But on the third time of trying, Jamie successfully passed his test!

Jamie showed an immense amount of perseverance and strength, even when he felt like the odds were against him. As much support as we could give him, it all came down to Jamie and his abilities to see the task through, and by the end, after gaining his P plates, he knew it was all worth it.

To celebrate our 9th birthday we have a great set of prizes for 4 lucky winners!

ALF Goal Set from Hart Sport is all you need for backyard footy practice and honing your skills. Comes with goal posts, point posts, bases, rubber footy, hand pump and carry bag to take to the park. Our friends from Hart Sport are kicking goals with this prize for one lucky family! RRP $159 hartsport.com.au

Nanoleaf Mini triangle interactive lights from Sensory Connect are compact modular LED light panels with a combination of smart technology and sleek ultra-thin design to brighten up a sensory space in your home. Multi-sensory experiences like touch interactions, real-time music sync, screen mirror, and more will delight your child in their calming space.

Our friends from Sensory Connect are lighting up someone’s life with this prize! RRP $189 sensoryconnect.com.au

Participation box and a Jelly Bean switch from Link Assistive allows you to control any electrical appliance by means of a switch, eg bubble machine, disco ball, blender, popcorn maker etc. Fun for learning switch access and independent control for people with physical disabilities. Our friends from Link Assistive Tech have donated these amazing prizes. Participation box: RRP $190, Jelly Bean switch: RRP $115 linkassistive.com

Works Product Kit from Kaiko Fidgets is an exploration fidget kit, with 7 different metal fidgets that are discreet, quiet and suitable for those that want age-appropriate fidgets. Our friends from Kaiko Fidgets are giving these away to a lucky winner. RRP $99 kaikofidgets.com

The Clinical Hub Team at Sunrise Medical provides parents & clinicians support & guidance during the assistive aechnology journey.

Game on for everyone

Ways to make game time accessible & inclusive

When the evenings draw in, or it’s just not the weather to be outside, there’s nothing quite like a few traditional games to pass the time. A good gaming session is not only great fun but so many games also offer brilliant development opportunitiessocial, emotional and cognitive.

How many times however, have you looked at a game and realised that it’s just not going to be possible for your child to easily participate? Whether it’s physical limitations, sensory sensitivities, cognitive barriers, or communication differences, these obstacles can put a damper on the game before things have even got underway.

Thankfully, modified games that cater to different abilities and needs are becoming more common; we’ve listed a few of our favourites below and there are also some practical tips and tricks for adapting your game nights (or afternoons!) to make sure everyone feels welcome and included:

ADAPTED GAMES

Scrabble: There’s a version of the classic word game that features Braille tiles, allowing visually impaired players to participate. Also, a large print version of the game is available where the board has large squares with pegs at each corner, so the tiles sit securely in place.

Uno with Braille: A card game where the cards feature Braille symbols alongside the regular numbers and colours.

Magnetic Scrabble: A version of Scrabble with magnetic tiles that adhere to the game board, making it easier for individuals with limited dexterity to move and position the tiles.

Magnetic ludo: Another game that uses magnets to stop those little pieces being easily knocked around.

Large Print Playing Cards: Standard playing cards with enlarged print, making it easier for individuals with visual impairments to read the suits and values. Tactile chess: This has easily differentiable squares and pieces for players with vision impairments. Additionally, the pieces stay in place with pegs on the base making it a great option for anyone with fine motor issues.

WAYS TO MAKE A GAMING SESSION MORE INCLUSIVE

Assistive devices

Make use of items such as card holders, card shufflers, or card dispensers - they can provide independence for individuals with limited hand dexterity or mobility.

Switch adaptions

A switch button might make it easier to play some games for people that have difficulty using their hands. You can use a switch to do things like rolling dice and rotating a bingo cage. You can purchase toys and games that are already switch-adapted or you can use a battery interrupter to adapt most battery operated toys and games to be activated by a switch.

Other tech

Did you know that Google or Siri can come to your aid if it’s physically difficult to roll or read dice? Simply ask to “Roll the dice” with Siri or “roll two dice” with Google Assistant they will roll two sixsided dice for you.

AAC

How about prepping some communication boards or use picture cards for specific games? One of our Source Kids’ devices has some gaming boards already set up in the system. Chat to your speechie if your child has a favourite game you’d like to set up.

Hey Siri “Roll the dice”

Collaborative play

Encouraging collaborative gameplay where players work together rather than compete can be beneficial for children who may struggle with competitive aspects or have difficulties with strategic planning. Keep turns short Minimising the time taken for each turn can help players stay focussed and in the game.

Extra time

Allowing additional time for players to take their turns or providing timers with adjustable settings can support anyone who needs more time due to cognitive or physical challenges.

Social stories

A social story can help your child understand how the gameplay will unfold along with some of the reactions they may encounter.

Game buddies

Assign someone a game buddy or facilitator who can provide assistance, read instructions aloud, or help with game mechanics.

By making gaming time inclusive, we’re not only providing our kids with brilliant development opportunities, but we’re also building a welcoming space that’s a source of joy, connection, and personal development for everyone.

What to look out for WHEN YOUR CHILD TURNS

WHEN YOUR CHILD TURNS

If your child is turning 18 this practical check list will guide you through their next steps into adulthood.

WHAT HAPPENS POST-SCHOOL

As your child approaches 18, the school journey will soon be finishing. Begin to plan a transition to post-school life and what this looks like. Post-school options are as varied as they are exciting. They include:

• TAFE

• University

• Supported group activities

• Running a microenterprise

• Volunteering

• Employment

So, how do you determine what option (or options) will work best for your child?

Start by thinking about their skills, strengths and interests. Remember what they can do will change over time and can be a combination of options.

Discuss with your child, talk to their school, ask therapists and service providers for their input and ideas.

DRIVER’S LICENCE

Learning to drive is another milestone on your child’s path to independence. Take a look at the article on pages 36-37 for more info on the processes involved.

PROOF OF AGE CARD

Now your child is an adult, they will need photo identification. If they don’t have a passport or learner's permit, they may want to consider obtaining a proof of age card which you can apply for online or at your local post office.

NDIS

If your child is a NDIS participant, you need to think through what support & services will be needed once they finish school.

Obtain reports from their therapist for evidence of support required and talk to your Local Area Coordinator or Support Coordinator (if you have one).

Talk to your child about whether they want you to continue to help them manage their Plan. If they want your assistance, be

sure to fill out a nominee form before they turn 18, so that you can continue to act on their behalf.

There are two types of NDIS nominees:

1. A correspondence nominee

2. A Plan nominee

To determine which is best suited to your child’s needs, contact your Local Area Coordinator.

Begin this process early, that way you will avoid losing access to any of your child’s online MyGov services.

Your child will also need to sign the form to provide consent for your new role as nominee.

CENTRELINK AND MEDICARE

Your child will need their own MyGov account. If your child wants you to continue to act on their behalf, Centrelink

requires that you become a nominee before your child turns 18.

You can contact Centrelink directly for more information.

Your child will need their own Medicare card. Medicare will also need you to complete an authorisation form if your child consents for you to access their medical records once they reach adulthood.

HEALTHCARE

The transition from paediatric to adult healthcare is different with every service provider.

Some paediatricians will continue to work with people up until the age of 21, while others have a cut-off at 18. This will need to be discussed with your child’s doctor and you will need to work with

USEFUL RESOURCES FROM ACD

NDIS

appointing a nominee: ndis.gov.au/ understanding/ families-and-carers/ guardians-andnominees-explained

Become a Centrelink nominee: servicesaustralia. gov.au/centrelinkonline-accounthelp-add-nominee

them to develop a transition plan.

Medicare authorisation form: servicesaustralia. gov.au/medicareforms?

Moving to adult health care: rch.org.au/ transition

Medical support person: publicadvocate.vic. gov.au/your-rights/ your-healthcare/ your-supportedmedical-decisions

Enrol to vote: vec.vic.gov.au/ enrolment/enrol-tovote

Assistance with voting: aec.gov.au/ assistance

Voting exemption form: aec.gov.au/ Enrolling_to_vote/ pdf/forms/objection/ er005aw.pdf

Securing their future: A guide to future planning: carergateway.gov.au/ future-planning

Be sure to gain consent from your child before attending any appointments or seeking out medical records on their behalf.

Your child may want to choose a Medical Support Person to assist them with medical decision making.

VOTING

In Australia, voting is compulsory for everyone aged 18 and over. So if your child has not already done so, they will need to enrol to vote.

The Australian Electoral Commission (AEC) offers a range of services to support people with disabilities to vote, including postal votes and early in-person voting.

If your child is incapable of voting, you must complete an exemption form.

DECISION MAKING

Now that your child is 18, they are legally considered an adult.

To support this transition, it’s helpful to talk to them about what this means, particularly their finances, healthcare and general care needs.

There are options like Supported Decision Making, Medical Support Person and Supportive Attorney.

There are also options like Supportive Guardians and Administrators to assist the person with disability to make decisions. Guardianship is where another person makes decisions on behalf of the person with disability. This is the last resort and only made when a less restrictive option is not possible.

FUTURE PLANNING

Now that adulthood has arrived, it’s time to look to your child’s future and your own.

Think about what support your child will need when you are no longer able to care for them.

Setting up supportive decision makers and making a will are an important part of future planning.

This information is reproduced with permission from the Association for Children with a Disability (ACD) who’ve been advocating for children with disability for more than 40 years. Visit acd.org.au

As a NDIS-registered Plan Management Provider, Maple Plan has a proven reputation for providing a personable and efficient service for managing NDIS funding. Participants are matched with a dedicated plan manager to guide them through the NDIS and help them get the most out of their funding. By getting to know and understand their participants, plan managers ensure that the plan is understood and that claims can be made with peace of mind.

Maple Plan offers participants a tailored service to meet their needs. An online dashboard allows for easy 24-hour management of the plan and up-to-date reporting of funding, as well as tracking any invoices from your support providers.

“The team at Maple Plan are excellent to work with. As a new participant, I couldn't have hoped to find better Plan Managers. They are highly responsive to any queries and efficient in processing any documentation, and every team member I have encountered has been courteous and supportive to deal with. I would highly recommend Maple Plan.”

Google Review – Emma.

Maple Plan offers a nationwide service with offices in Melbourne and Brisbane to deliver a more localised and personal experience.

With a commitment to offering accessible options for all Australians on the NDIS, Maple Plan uses Easy-Read documents to help participants and their support networks understand the NDIS and the role of Plan Management. In addition, our team speak more than 20 languages, and have further access to translation services to ensure that everyone can understand their NDIS plan and access the support they need.

The Maple Plan gateway is a user-friendly and straightforward resource that participants and their support network use to help keep track of funding. The customisable system lets participants view plan funding, spending, and action invoices with manual authorisations or standing authorities. Maple Plan provides comprehensive plan reporting, with monthly statements and the ability to request an activity report detailing the plan’s usage to date. The online dashboard allows participants to make plan management as simple, or as involved, as they want it to be.

“Extremely helpful and professional. I would highly recommend Maple Plan. They go that extra mile to help you.”

Google Review – Aaron.

Maple Plan provides an independent service focusing on giving the best options for NDIS participants. By only offering Plan Management services, advice is impartial and focused on helping people get the most out of their plan funding. Participants can rest easy knowing that their support is funded, risk-free and in line with NDIS guidelines. With no out-of-pocket cost or impact on their funding, Maple Plan is an accessible and exceptional choice in plan management.

For any questions about plan management or to register, please don’t hesitate to contact us, or visit us online.

Maple Plan PTY LTD provides exceptional and personable plan management to those on the NDIS.

After Sales Care

Maintaining Assistive Technology to sustain quality

An important factor when choosing your AT provider is how well they support you with any after sales care you need. Astris PME has you covered!

One of our key focuses at Astris PME is our ongoing commitment to providing the highest level of service and support to therapists, equipment users and their families. To ensure better after-sales support for our clients, we’ve added a few new key members to our Service Department, including four mobile service technicians servicing Greater Sydney and surrounds. In addition, we have a service tech in each of our Melbourne, Brisbane, Canberra and Young branches.

Our fleet of mobile workshops can come to your home, school, hospital or clinic, and provide on-site repairs, maintenance, and adjustments. For your peace of mind, we also offer Programmed Maintenance Packages to many locations. This will help safeguard and extend the life of your equipment and help you stay mobile.

At Astris PME, after sales care is a fundamental part of the service we provide because it can make a significant difference to the well-being of all people with a disability. We are here for you!

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We stand out from the rest with our awards:

PMA Awarded by Australian Enterprise Awards “Best NDIS Plan Management Service Provider”

Oceania 2023

PMA Awarded by Disability Update

“The most Outstanding Intermediary in the Disability Sector” Australasia 2019

GET THE NDIS SUPPORT YOU DESERVE

Are you an NDIS participant who is looking for Plan Management?

At Plan Manage Assist (PMA) we pride ourselves as being different from other providers. We are passionate, with in depth experience from both sides as our directors are carers for family members that have disabilities. We provide a very personal and professional service that aligns with our passion and commitment to disability to ensure maximum outcomes for participants.

Our first-hand experience of the NDIS process provides you with the understanding of the benefits within the NDIS. Our plan managers are experts and will guide you in all aspects of your NDIS plan, assist you in managing your budget saving you time and reducing your stress.

planmanageassist.com.au

enquiries@planmanageassist.com.au

1300 199 960

PUBERTY BLUES

Navigating the changes of puberty: A guide for teens and parents

Puberty isn’t just about hormones, moody teens and rollercoaster rides of emotions (although there is a lot of that!). It can also be a time of growth as you share information with your child and both navigate this new chapter of life, together.

Planet Puberty has great insights for parents and carers of autistic young people and those with intellectual disability, helping them navigate the changes to their child’s bodies, emotions and social interactions. They offer information at beginner, intermediate and advanced levels, so you can find the level of information that is right for your family. Five key topic areas are covered: the body, relationships, identity, feeling good and keeping safe.

If you haven’t started talking to your child or teen about puberty yet, that’s OK – it’s never too late to start!

WHAT HAPPENS IN PUBERTY?

There are lots of changes that will happen to your child when they go through puberty. These are:

• Body changes

• Emotional changes

• Social changes

EMOTIONAL CHANGES

With puberty comes the release of extra hormones which brings about emotional changes for both girls and boys. Emotions might change quickly. Young people might:

• Feel misunderstood

• Argue with family members, teachers or friends

• Want to spend time by themselves

• Feel angry, sad or lonely

SOCIAL CHANGES

Social changes include changing expectations and relationships. These include:

• Your child’s growing independence (Independence means doing things by yourself)

• Social changes and learning new skills

• Talking about changing relationships with your child

• Ways to help your child prepare for social changes at puberty

BODY CHANGES

These can start as young as eight and continue through the teen years.

GIRLS

• Pubic hair

• Growth spurt

• Underarm and body hair

• Hip and breast development

• Vulva, vagina and uterus grow and develop

• Vaginal discharge

• Periods

• Ovaries begin releasing eggs

• Muscle development

• Pimples

• Body odour

YOUR CHILD’S GROWING INDEPENDENCE

As your child grows up, they may want:

• More privacy. For example, when speaking to their friends or getting changed

• More time with friends and less time with family

• A boyfriend or girlfriend

• More independence

These are all normal things that many children want as they grow older. Some of the things your child wants may not happen straight away.

This might be because:

• They are too young

• Their support needs make it hard

• It is out of your control, like finding a boyfriend or girlfriend

This is OK.

BOYS

• Pubic hair

• Growth spurt

• Underarm and body hair

• Penis and testicles grow and develop

• More frequent erections

• Sperm production

• Wet dreams

• Shoulders broaden and muscles develop

• Facial hair

• Pimples

• Body odour

Talk to your child about how you can help them learn new skills to meet these goals as they get older. For example, you cannot promise your child that they will find a friend, but you can make a plan to help your child make new friends.

SOCIAL GOALS AND LEARNING NEW SKILLS

Some of the skills that can make it easier for your child to make new relationships and be more independent are:

• Good hygiene

• Independent living skills

• Conversation skills

Some children do not like learning these skills. You can use their goals to encourage them.

For example, if your child wants a

boyfriend/girlfriend, you can use this goal to encourage them to improve their hygiene and conversation skills. Learning these skills will also help your child to:

• Keep their body healthy

• Make healthy relationships in the future

• Be more independent

TEACHING YOUR CHILD ABOUT SOCIAL CHANGES

Think about your own values and experiences

When supporting your child to learn about the social changes that happen during puberty it is important to think about:

• Your personal, cultural and religious values

• What you want life to look like for your child in the future

• What you want them to be able to do

• What you want their relationships to look like

This will help you to answer your child’s

questions about social changes at puberty. It will help you to support them to learn new skills to meet their new social goals.

Support your child to be more independent Independence is different for every child. Think about the skills that your child has now, and how you can support them to build those skills.

For example: If your child needs help putting on clothes, they could choose the outfit they want to wear.

You could start by asking them to pick between two different outfits.

Or if your child wants to make new friends but they find it hard talking to strangers, they could practice ordering food at the takeaway shop.

Head to Planet Puberty: planetpuberty.org.au to access everything Planet Pubertyhas to offer!

Puberty HELPERS

SHAVER - EXTREME GRIP LITHIUMION MULTIGROOM TRIMMER

The multigroom trimmer features a no-slip grip for ease of shaving and provides exceptional control to make cutting even more precise. It has a 2-hour run time off a 4-hour charge. Ideal for stubble and full beards. RRP $99 shavershop.com.au

PJAMA PANTS AND WATERPROOF BAG

Sleeping over at friend’s house is a rite of passage for teenage kids! However, for a teen with incontinence issues, this can be very upsetting and stressful. Having to wear a pull-up may not be an option and this is where the Pjama pants and shorts are a great, discreet option. The Pjama pants and shorts will keep your teen dry, and confident! RRP From $128 pjama.com.au

WATER FLOSSERS – FOR AN EASY FLOSS!

For teens with limited mobility or certain sensory issues, the water flosser is a great alternative. The Waterpik Express water flosser is the easiest & most effective way to floss, providing a unique combination of water pressure and pulsations to clean deep between teeth and below the gumline. RRP $99.99 chemistwarehouse.com.au

MODIBODI – PERIOD PROOF UNDIES

Your teen will remain dry and secure with the moderate to high absorbency range from ModiBodi. Designed to absorb 2-3 tampons, the period proof range is a great option for teens who don’t want to deal with disposable products and messy sheets. RRP from $24 modibodi.com

TOOTHPASTE DISPENSER –FOR MESS-FREE MORNINGS!

Perfect for teens with weak grip, limited hand function or those with single hand use, this very easy to use toothpaste dispenser efficiently squeezes toothpaste out with a simple push. RRP $42 beyondadaptive.com.au

WHAT’S HAPPENING TO ELLIE AND TOM?

A great resource for parents to share with their children and tweens about the emotional and physical changes that puberty brings. With easy-tofollow language and positive, factual messaging, these simple picture books tell the story of Ellie and Tom as they enter puberty. They are ideal for autistic children or those with developmental delays and provide a perfect starting point for parents and carers to discuss things further. sensoryoasisforkids.com.au

New research reveals

cost benefit of autism-specific early intervention

Autism Spectrum Disorder is a lifelong developmental condition, defined by social communication challenges and repetitive behaviours. For young children with a diagnosis, early intervention is a proven best-practice support. Now, new research reveals early intervention’s significant cost-benefit for Australian communities.

According to a 2023 study commissioned by AEIOU Foundation, every dollar invested into autism-specific early intervention results in a societal return of $6.16 to the community, changing the lives of thousands of individuals and families. Researchers found that even when presenting with elevated levels of

difficulty, children who attend an intensive early intervention setting that integrates therapy, education and care make clear gains.

Ongoing research at AEIOU shows children enrolled in the service develop functional communication, fine and gross motor skills, and independent living skills. On average, children commence after they have turned three, with 17% toilet trained. Upon completion of the program, 81% of children are fully toilet trained.

The study revealed that the children learned skills at rates over and above what would be expected for a typically developing child.

Findings also showed that early intervention can enhance quality of life for autistic children. They, and their families, can participate more actively in their local community and the workforce

with this support.

The ‘real world’ data was informed by clinical assessments conducted with over 800 Australian children aged 2 to 6 with a diagnosis of autism and highly complex needs.

This data lends itself to more than one academic study. This is a live, working repository unlike any other in Australia.

The study asked ‘Is an integrated early intervention approach beneficial to the individual, to families, to society?’

With an independent cost benefit analysis of AEIOU’s program by Synergies Economic Consulting demonstrating that intensive early intervention programs deliver average savings of approximately $297,000 per child over a single child’s lifetime, the answer is a resounding yes.

The study revealed that the children learned skills at rates over and above what would be expected for a typically developing child.

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Mums raising children with a disability

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How does GYMNASTICS BENEFIT

children with disabilities?

Gymnastics is a beautiful sport. But it’s not just the grace, power and aerobic displays that make it so wonderful. As a sport with immense variety and opportunity, gymnastics is accessible for a range of ages and abilities – making it one of the most popular sports in Australia.

For children with disabilities, the sport offers incredible benefits due to the fundamental movement skills taught throughout all programs. These skills are the building blocks for movements that will help a child throughout the course of their life. Often, gymnastics can serve as a complement for children undergoing therapy with allied health specialists.

Some of the many benefits of gymnastics for children with disabilities include:

• Develops gross motor skills, proprioception, gross motor planning

• Develops confidence

• Creates positive environments for social interaction

• Engages participants in safe risk taking

• Promotes flexibility, strength, balance and coordination

• Supports kids at school by working on skills such as listening, collaborating, following instructions and sitting on the floor with others

• Allows participants to set their own goals within the sport

• It is self-paced, meaning gymnasts can progress comfortably in their own time

• Opens opportunities with various competition pathways available

• Allows for greater social awareness through inclusion, and teaches peers to be more understanding that not everyone is the same

• Supports whole families to participate in activities with the wider community

WHAT SORT OF PROGRAMS ARE AVAILABLE?

Every state will vary in its offerings, however some of the most popular types of programs fall under the Gymnastics for All category. This includes KinderGym for 0-5 years olds, GymAbility and a mix of integrated and specialised classes for kids with disabilities.

KinderGym: A national program for children under 5, KinderGym usually involves a child participating in gymnastics classes with their parent or caregiver. The program has been developed to align with the principles of physical literacy and early child development, while combining the fun of play-based learning and offering children a chance to challenge themselves in a safe and exciting environment.

GymAbility: GymAbility aims to support participants of all ages and abilities to enjoy movement and mobility. The program focuses on each participant’s needs to create activities that celebrate what each individual can achieve. While most classes are recreational, some states offer competitive pathways, such as NSW’s AcroAbility program.

Special Olympics Gymnastics: Gymnastics participants join one of many sports within the Special Olympics organisation, which has been designed to serve athletes with intellectual disabilities. Athletes can join from a young age and, if they wish, train to compete at state, national and international competitions. Gymnasts can choose between three disciplines: Men’s Artistic, Women’s Artistic or Rhythmic Gymnastics.

TeamGym: This program combines parts of tumbling, mini trampoline and dance to create an exciting team competition event. It’s an inclusive program where groups of six to 12 members perform together at different levels (novice, intermediate and advanced), based on gymnasts’ competencies.

State-based programs: For example, Aerobase is a Victorian-based program designed to introduce participants to aerobic gymnastics in schools. This program is in line with the guidelines and criteria of the Movement and Physical Activity components of the current Victorian Curriculum for Health and Physical Education for Students with Disability.

Meanwhile, in NSW, the state’s governing body has partnered with Everyday Independence to provide extra therapist-based support within the gym environment.

Brielle Mann | 16 Coach and rhythmic gymnast

WHAT DO YOU LIKE MOST ABOUT GYMNASTICS?

My most favourite thing about gymnastics is the amazing people that it surrounds me with. I have made some of my closest friends through gymnastics and the supportive environment that it creates has helped me grow and improve over the years.

TELL US A LITTLE MORE ABOUT YOUR GYMNASTICS JOURNEY.

I am currently 16 years old, and I first started gymnastics in a gym fun class when I was three. I moved into rhythmic gymnastics when I was five and while I was also doing dance classes. After a few years I began to focus solely on rhythmic because I found I enjoyed it the most. I started competing when I was seven and I have since competed in lots of competitions individually and in groups, working my way up to my current level – Level 9.

WHAT ARE YOUR GYMNASTICS GOALS?

FROM PARTICIPATION TO EMPLOYMENT

Aside from joining a gymnastics program as an athlete, people with disabilities have found themselves in rewarding careers as gymnastics coaches.

HOW DO YOU GET STARTED?

Families and individuals are encouraged to contact their state’s governing body, to be linked to a suitable affiliated gymnastics club, or learn more about becoming a coach. Alternatively, head to the Find a Club function on the Gymnastics Australia website gymnastics.org.au

My goal for gymnastics is to continue to compete in competitions and improve my skills. I have also recently started coaching and judging and I look forward to further exploring the sport from outside the competition floor.

HOW DO YOU FEEL WHILE DOING GYMNASTICS?

Whether it is a training session that I have been looking forward to all day, coaching a younger squad or a competition coming up that I am excited about, gymnastics has always been something that makes me feel happy, supported and encouraged.

To read more Gymnast profiles visit sourcekids.com.au

NSW: info@gymnsw.org.au | VIC: info@gymnasticsvictoria.org.au | QLD: info@gymqld.org.au | SA: admin@gymsa.com.au | WA: info@gymnasticswa.org.au | TAS: gymtas@gymnastics.org.au | NT: programcoordinator@gymnt.com.au | ACT: gymact@gymnastics.org.au

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Making Physical Therapy FUN

LusioMATE is an app with wearable sensors that attach to any part of the body and connect via Bluetooth to an ever growing number of FUN exergames created to entertain and motivate Players through their tailor made PT programs.

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Let’s start a bright future for your child.

Our passionate team of health professionals is here to help your child on their therapy journey. We offer evidence-informed therapies tailored to your unique child and family.

Help your child thrive

• Occupational Therapy

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• Early Start Denver Model

• Physiotherapy

• Dietetics

Book an appointment with one of our therapists today.

To find a clinic near you visit earlystartaustralia.com.au

Free Online Safety Training

Equipping people with disability with skills to identify and overcome online risks.

• Recognise and manage cyberbullying,

• Safe online relationships,

• Protect personal private information,

Developed in collaboration with leading cyber safety experts, ySafe, thanks to funding from The Office of the eSafety Commissioner’s Online Safety Grants Program

Access the free training at www.interactionservices.org/online-safety

Supports available in Greater Sydney and Central Coast

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Special Purpose Car Seats

EXPLAINED

Caring for a child with disability can present unique challenges for parents and carers, particularly when it comes to transport. Children with certain disabilities may require additional support to ensure their safety and comfort while travelling in a vehicle and in these cases, a special purpose car seat may be needed.

Special purpose car seats are specifically designed to support the transport needs of children with disabilities and medical conditions travelling in motor vehicles, when they are unable to travel in an Australian standard car seat. Unlike overseas standards and regulations, the Australian/New Zealand standard for child restraints does not cater for special purpose car seats. This means that the special purpose car seats available in Australia come from overseas and comply with overseas standards and regulations.

Until recent times, Australia had a limited range of special purpose car seats, resulting in many people modifying Australian standard car seats. Modified Australian standard car seats no longer comply with the Australian/New Zealand Standard for child restraints,

this is because the process of modification involves adding accessories or making changes to the car seat not in accordance with the manufacturer’s instructions for use. Accessories include, for example, postural supports, harnesses/vests, additional padding, and cross chest straps, not supplied with the car seat. These modifications may impact on the safety of a child in a crash.

To ensure Australia has a suitable range of special purpose car seats and independent knowledge about their safety and performance, MACA established the world leading Australian Safety Assessment Program (AuSAP). MACAMobility and Accessibility for Children in Australia Ltd – is a registered charity dedicated to advancing the rights of children with disabilities and medical conditions to safe and accessible transport.

FEATURES

These seats come with a range of features to help improve a child’s positioning, comfort and safety, and cater for older and larger children (and adults), unlike Australian standard car seats which cater for children up to 10-12 years.

Swivel base

This feature is currently only available on special purpose car seats in Australia. It is designed to make it easier for parents

and carers to transfer the child in and out of the vehicle. A national survey by MACA showed transferring children was the biggest challenge for parents.

Anti-escape options: This ranges from optional buckles (e.g pen popper) to add-on features. The same survey by MACA highlighted that children getting out of their car seat and/or seatbelt, whilst the vehicle is moving, is a significant challenge for families.

Extra postural support: This may include extra padding/inserts, pommel, abductor wedge, lateral trunk support, and extra head support to assist with comfort and positioning.

Footrests: Footrests are often provided with levels of adjustment to cater for the child’s size and need. Most footrests work in combination with a swivel base.

Extra recline and tilt in space: This may be built-in to the car seat or provided as an optional feature. Most special purpose car seats provide greater recline capability than Australian standard car seats.

Support tray: This attaches to the special purpose car seat offering additional support for the child’s upper limb positioning.

Larger vehicle restraint options: Special purpose car seats also offer larger vehicle restraint options than Australian

Ashton is travelling in a HERO-NXT, the first special purpose car seat available in Australia suitable for babies.

National survey

MACA needs your help to complete a research survey. If your child travels in a specialty harness/vest and is under 16 years, please complete our survey.

Survey outcomes will contribute to the development of guidance and recommendations for using harnesses/vests with children.

Scan code for survey link.

standard car seats, catering for bigger children and adults (e.g up to 75 kilos). Australian standard car seats generally cater for children up to approximately 1012 years of age.

Safe use: All special purpose car seats have built-in harnesses. However, in some cases the built-in harness is provided for postural support only. This can be confusing as people may assume the built-in harness is designed to protect the child in a crash, and do not use the vehicle seatbelt around the child and the car seat. To support the safe use of special purpose car seats in Australia, MACA provides specialist training and resources for health professionals, suppliers, and other organisations.

Are special purpose car seats safe?

MACA has a national product register which lists the special purpose car seats that have been independently assessed

and crash tested for their safety and performance as part of AuSAP. For more information, visit MACA’s websitemacahub.org

How can I find out what special purpose car seats are available in Australia?

Visit MACA’s national product register available at macahub.org

To ensure a suitable range of special purpose car seats for Australia MACA regularly scans the global market for new products and product updates. They then work directly with Australian importers to independently crash test each product. Where the product is assessed as suitable by an expert committee, it is then published on MACA’s national product register.

What age can a child start travelling in a special purpose car

seat?

This depends on the child’s individual needs. Australia now has a range of special purpose car seats suitable for use by young babies, children, and adults. If there’s no Australian Standard car seat suitable for a child then a special purpose car seat needs to be considered, regardless of the child’s age.

Do you need a medical certificate or other documentation to legally use a special purpose car seat?

Some states and territories require a medical certificate to be carried in the vehicle the child is travelling in when using a special purpose car seat, and in some cases an Advice to Parent form. You can find out more about state and territory requirements at the MACA website.

To find out more about MACA, their projects and suite of resources visit macahub.org

BECAUSE EVERY SOURCE KID DESERVES AN AWARD

We want to honour and celebrate the determination, courage and triumphs of our kids and young adults, for all that they have achieved this year.

It might be toilet training, learning to ride a bike, developing the physical control to shake their head, learning to use their communication device, coping with yet another surgery, eating a new food. Whatever the achievement, we want to recognise and celebrate them.

Download your certificate now, share their achievement with us and let’s lift up these wonderful people in our lives.

VISION Clear

When Professor Robyn Jamieson started out as a young doctor working on the genetics of blindness, she could only hope that one day she could see patients’ sight restored in her lifetime.

“It seemed like science fiction, but about 10 years ago, we started to realise that this really could happen,’’ Professor Jamieson said. “It’s been an evolution which is constantly astounding. It’s really amazing the progress that’s been made.’’

Professor Jamieson is Head of the Eye Genetics Research Unit at Children’s Medical Research Institute and Sydney Children’s Hospitals Network. She is also the leader of Ocular Gene and Cell Therapies Australia.

She made history as part of a team that delivered Australia’s first ever gene therapy for an inherited blinding eye condition in 2020. Gene therapy involves using a healthy copy of a gene to replace the faulty gene in a patient with one injection. The first gene therapy approved by the TGA in Australian was called Luxturna and is used for children and adults with mutations in the RPE65 gene that causes blindness.

As a geneticist, Professor Jamieson had been working with many of these patients since they were diagnosed as young children.

“These patients were mostly diagnosed as babies or during early childhood, and

it is really amazing to think about the roller coaster they’ve been on and what a fantastic result they’re now experiencing,’’ Professor Jamieson said. “We hoped the research would be there, but to see what is happening with the gene therapy now is so fabulous. We were all on tenterhooks, and when the treatment got approved it was such a great feeling to be able to tell the families.

“They’re just so pleased to have had this opportunity, and not only are they maintaining the vision they had, but what we were surprised by, is they are reporting improvements in their vision and that’s really unexpected.

“We did give them hope, but they were probably holding back - not sure about the end result. What they’ve reported the most is the improvement in their night vision. Now they can see people and objects and stars – they’re all talking about seeing stars now.’’

While the success of this therapy gives hope for others with different conditions, there is still much work to be done. When a child is diagnosed with a genetic eye condition, a geneticist must then work out what is causing the problem. This can take months and sometimes years.

“We really are in a fantastic position now,’’ Professor Jamieson said. “But the biggest thing is, we need a genetic diagnosis to give a gene therapy. It’s a privilege to be in a situation to work

out a genetic diagnosis and to work on new therapies, that is a really amazing opportunity.

“We’re in a good situation but we still need funding, because for a lot of people, their diagnosis is not clear cut and for others there isn’t a therapy on offer. There is still plenty of work to be done.’’

Only 50% of patients get a clearcut genetic diagnosis for their vision impairment.

“The world is our oyster if we can get a diagnosis,’’ she said. “While it is frustrating when you have that patient sitting in front of you and you want to give them answers, you have to step back and look at where we were 20 years ago.

“These families whose children have had gene therapy, while they’d accepted their child’s vision loss, they were still very sad. They held out hope for them, so it really is amazing, and I’m relieved that something did happen after so long of dreaming about it.’’

Support the work of Professor Jamieson and her team by donating to Jeans for Genes which fundraises for the Children’s Medical Research Institute. CMRIJeansforGenes.org.au

The future for gene therapy & genetic eye conditions is, quite literally, looking bright.

“The world is our oyster if we can get a diagnosis”

Amelia’s story

“Devastation can’t even describe it. Confusion, turmoil, despair, grief. It was a real whirlwind where you think, what is the future for my child going to be like? Nothing can ever prepare you for that moment. And nothing did prepare us because we had none of this in our family. It was a recessive gene that both my husband and I carried.’’

Amelia, 7, is one of the faces of the 2023 Jeans for Genes campaign which raises funds for the vital work being done in the labs at Children’s Medical Research Institute. Scientists are finding treatments and cures for the 1 in 20 children living with birth defects and genetic diseases (like cancer and inherited blindness), through world-leading medical research.

It was when Amelia was three months old that her parents, Anita and Mathew, were told by their GP that her eyes weren’t following movement around the room. She was sent for further testing, and by six months old, they got the news that Amelia had Leber’s congenital amaurosis which would leave her with very little vision.

“I cried for a week; a full week,’’ Anita said. “I remember night and day….. I cried, wondering what the future for my child was going to be like. How is she going to walk? How is she going to stay safe and not get hit by a car?’’

Seven years later, life is a lot brighter for Amelia. She is a talented pianist who learns songs easily after only a couple of listens. She has won awards for her brilliance at mastering Braille and is progressing well at school with both sport and academics.

Amelia walks with a cane and it is only now that she’s older that her parents can assess what she is and isn’t able to see.

“I can stand directly in front of

perspective was discovering that Professor Robyn Jamieson at Children’s Medical Research Institute had been involved in Australia’s first ever gene therapy for an inherited eye disease and there was work being done for other blinding eye conditions.

“Our team is involved in new therapy and clinical trials for genetic eye disorders, and there have been some great outcomes that give us impetus and hope for our future efforts,’’ Professor Jamieson said.

“This research can make a real difference to people by leading to therapy-eligibility or development of new treatments that have never previously been available. My hope is that we can make a positive difference in the lives of many more people.’’

Anita said it was “beyond exciting’’ to go into the labs and hear from Professor Jamieson about her team’s work and urged all Australians to support their research.

“You never think it’s going to happen to you – ever. That’s not something anybody ever thinks. It’s always something that happens to someone else. But it could, and research is really important to support because it can make a really big difference in the lives of those that are affected and those around us. It’s a really important cause, and we hope that we’ll see a change in our lives.’’

Celebrate the 30th year of Jeans for Genes Day on Friday 4th August. To get involved or donate, visit JeansforGenes.org.au

When her only child was diagnosed with a genetic eye condition, mum Anita described the emotions as “like going through the stage of grief, watching your blind child grow up in a sighted world’’.

& Watches Reads

Books and shows on our radar right now…

SUPPORTING AUTISTIC GIRLS AND GENDER DIVERSE YOUTH

Want to know how to better support autistic girls and gender diverse youth? This is an authentic resource for parents, teachers and allied health professionals written and illustrated by autistic women and gender diverse individuals. You will be given the inside scoop, through their intimate knowledge, recollections and advice from growing up autistic.

This book blends what you must know, what you need to know, and what you should know, all while gently walking you down the path towards a more neuro-affirming and inclusive approach to home and school life. yellowladybugs.com.au

Fidget Toys

MY BRAIN IS A RACE CAR –NELL HARRIS

A beautiful story for kids to help understand a neurodivergent brain. Created and inspired by the author’s daughter’s ADHD diagnosis, Nell Harris wanted to gift her a book that helped explain her brain’s processes and needs. No big words or acronyms that result in ‘what does that mean’ and bring the child out of the story. amazon.com.au

You can also watch a YouTube reading of the story by Nell. @easilyinspired_nell

CHLOE HAYDEN PODCAST –BOLDLY ME

In this series, Chloé Hayden (from Netflix’s Heartbreak High) will chat to people that, just like her, are living life boldly and are unapologetically themselves. Chloe will be joined by people known for living their lives authentically, and with confidence. podcasts.apple.com/au/podcast/boldly-me

THE SECRET LIFE OF CARERS

Carers Australia’s podcast, The Secret Life of Carers, highlights the unique experiences of Australia’s 2.65 million unpaid carers. You’ll hear stories from everyday people reflecting on their role as a carer, the people they support, and the services they access. carersaustralia.com.au/news-media/secretlife-of-carers-podcast/

PETER PAN – DISNEY PLUS

Disney’s new live action re-telling of this children’s favourite, features actor Noah Matthews Matofsky. Noah, who has Down syndrome, plays Lost Boy Slightly. We love the diversity and inclusivity of the entire cast. Streaming now on Disney+ disneyplus.com/movies/peter-pan-wendy

Standers

Standers provide an excellent opportunity for children to engage and interact with peers. Here’s a great selection for all ages, some you’ll find at our national expos. Come ‘n’ try!

AKCES-MED SMART STANDER

Weight: 35kg to 95kg

A sturdy upright standing frame that provides many benefits including the user adopting an upright position which is safe and comfortable and highly supportive.

Both chest and pelvic braces adjust to a person’s body to assist with an upright position with generous room for growth, sizing and adjustment

Smart Stander is suited to a range of conditions.

JENX MULTISTANDER

Weight: up to 35kg

Height: up to 160cm

• Supine, prone & upright standing frame suitable for children from around 9 months right up to 13 years.

• Ideal for growing children in multi-use environments. Provides 3-in-1 positioning in both neutral or abducted standing for children with moderate to complex needs.

• Multistander size 2 also available – suitable for ages 4-13 years.

LECKEY HORIZON 3-IN-1 STANDER

Weight: up to 100kg

Height: up to 180cm

• Provides outstanding postural support and pelvic stability in either prone, supine or upright.

• The range of independently adjustable features and electronic function make it a breeze to operate with a full range from upright to fully horizontal position.

• Ideal for complex conditions or adults who have not benefited from standing therapy for some time.

Available in four sizes

R82 CARIBOU

Weight: up to 100kg

Height: up to 184cm

• The Caribou is a standing frame that supports a prone, upright, or supine standing position.

• The tilt function and the extensive accessories selection accomodates users who have severe limitations in head and trunk control.

COME AND TRY!

Most of these products will be on display at our expos: sourcekids.com.au/disability-expo

*Chat to a product specialist about your child’s individual needs

BANTAM STANDER (SUPINE & SIT TO STAND)

Weight: up to 91kg

Height: up to 168cm

• A unique standing frame for children which combines the convenience of a sit-to-stand stander with the additional functionality of a supine stander.

• The combination allows the child to be positioned in an infinite number of positions.

• Available in three sizes.

BUDDY STANDERS

Weight: up to 40kg

• Buddy is an entry-level vertical stander designed for children around 6 to 12years (guide only, please use sizing rather than age).

• It’s for children who require low to moderate levels of support whilst weight bearing.

• Buddy is slimline, easy to use and manoeuvre. Available

JENX STANDZ

Weight: up to 70kg

Height: up to 160cm

• Highly configurable standing frame that can be set up in supine, prone, upright, and abduction postures depending on the developing needs of the child.

• Independently adjustable supports and a wide range of accessories mean that each individual postural requirement of the child can be accommodated.

• Available in 2 sizes.

RABBIT UP STANDER

Weight: up to 70kg

Height: up to 180cm

• A standing frame that supports an upright or prone standing position.

• A truly adaptable stander as offers the users the freedom to explore using the two optional driving wheels.

JENX STANDZ

Weight: up to 60kg

Height: up to 175cm

• Standz 2 offers functions and accessories that are appropriate for older, taller, heavier, and stronger users.

• Offers the option for prone or supine standing positions and accommodates for abducted or neutral leg positioning.

• A versatile standing system designed for children between the ages of 5–14 years old.

LECKEY SQUIGGLES & STANDER

Weight: up to 80kg

Height: up to 149cm

• 3-in-1 stander, offering prone, upright and supine.

• Stander promotes proper alignment in the hips, knees and feet while supporting your child.

• Practical and easy to use for parents and carers.

EASYSTAND EVOLVE

Weight: up to 159kg

Height: up to 208kg

One of the most supportive and comfortable sit-to-stand standers

The modular design ensures the Evolv is functional for many different users, however when more support is needed a wide variety of positioning options can be added. Allows for full extension at the hips and knees for those with sufficient range of motion (ROM) and full weight-bearing on the long bones of

JENX MONKEY STAND

Weight: up to 25kg

Height: up to 90cm

• A simple, yet highly adjustable standing system that provides prone to upright positioning for children from 9 months to 4 years.

• Specifically designed for younger children, it offers smooth and easy angle adjustment, can go from upright at 90 degrees all the way down to 20 degrees prone.

• The wide-angle range is the perfect way to gradually build tolerance to standing as part of a therapy program.

ELLA STANDING FRAME

Weight: up to 80kg

Height: up to 180cm

• The frame adapts easily into the most demanding needs related to standing. Increasing muscle tone, stretching the muscles, strengthening the bones and ligaments.

• This 3-in-1 stander can accommodate full range from supine, through to upright and prone standing.

• A supremely adaptable stander with smart ergonomics and easy setup.

RIFTON MOBILE STANDER

Weight: up to 70kg

Height: up to 180cm

• A mobile prone stander, makes it easy – even for those with no weight-bearing ability.

• Rolls easily and supports standing mobility from non-weight-bearing to full weight-bearing.

• Skill building in action, a way to strengthen motor skills and work toward independent standing.

ZING STANDER

Weight: up to 70kg

Height: up to 152cm

• The Zing MPS is the only multi-position stander that pivots in two directions, allowing the unit to go from flat-to-load supine to 20 degrees prone in one motion.

• There is no need to transfer the user in and out, flip pads, foot plates and trays. This ability provides a therapeutic opportunity not possible with other standing frames.

• It is also one of the few standers that provides the option of up to 30 degrees of independent leg abduction.

RIFTON PRONE STANDER

Weight: up to 200kg

Height: up to 72cm

• Optional components enable therapists to customise the supports to a client’s needs.

• When vertical, the Prone Stander’s footboard is almost at floor level, making transfers easy.

• Adjustments are easy to make.

RIFTON SUPINE STANDER

Weight: up to 113kg

Height: up to 182cm

• Supine Stander is ideal for the classroom, whilst providing many therapeutic benefits including head support with partial weight-bearing.

• The vertical height adjustment makes transfers easier and provides versatility, adapting to the needs of many different students.

• Optional components are available to tailor the standing frame to individual positioning needs.

SUPPLIERS

For a full list of suppliers, please scan QR code.

A Lifeline for Families of Children with Complex Medical Needs

For families with children facing serious medical conditions, finding adequate support and care can be an overwhelming challenge.

Devoted parents, Kimberley and Andy, and their daughter Grace found themselves in such a situation when Grace began experiencing seizures shortly after birth This is a story of their journey and emphasises the crucial role played by Allowah, a Sydney-based specialised hospital and NDIS provider that offers ongoing clinical care and medical support to children living with complex needs.

Grace's Battle with Seizures

From the outset, Grace's life was marked by the distressing presence of seizures An alarming

frequency of up to 50 seizures per day quickly became the norm. The gravity of the situation was not lost on Kimberley and Andy, as medical professionals informed her that Grace's condition was medication-resistant, making it even more challenging to manage

The Devastating Impact on Grace's Life

Grace's condition is life-limiting, causing significant damage to her brain and impairing various bodily functions. The seizures have gradually diminished her abilities, hindering her capacity to walk, talk, swallow, and even clear her airways This reality brings immense grief to Kimberley and Andy and raises crucial questions about the need to find appropriate support for a child like Grace

The Quest for Specialised Care

Kimberley and Andy soon realised that the expertise required to address Grace's complex needs exceeded what tertiary hospitals could provide. The search for a facility equipped with the necessary knowledge and experience led them to Allowah Allowah stood out as the sole option for ongoing clinical care and medical support, in a friendly environment that still allowed for regular access to experienced doctors

Scan to watch the full video

Unwavering Support from Allowah

Allowah emerged as a beacon of hope for Kimberley and Grace. The rollercoaster of their journey was made more bearable through the unwavering support they received from the dedicated professionals at the facility Having people to talk to and knowing that their questions would be answered became vital pillars of strength for their family

Respite Stays

A respite stay allows carers the opportunity to take a much-needed break, knowing that their child is receiving the care they need in during this time. Respite care can be for just a few hours, or may be an overnight stay, or longer, such as for the weekend.

Allowah offers short-term or respite stays in our bright, fully equipped facility in Dundas Valley, Sydney. With at least one RN on site and very experienced paediatricians on call 24/7, Allowah provides a level of respite care second to none.

Carer Support

The Importance of Allowah for Parents & Carers

For Grace's family, and many other like them, the role Allowah plays in day-to-day life is so valuable. Managing Grace's care is a monumental task that takes a toll on both her family's physical and emotional wellbeing Doing it on their own, the lack of sleep, constant stress, and perpetual vigilance would become nearly insurmountable The respite that Allowah provides allows Kimberley and Andy the rest they need to look after themselves and their daughter

A Unique Haven for Children with Complex Needs

Allowah stands as a singular refuge for families like Kimberley and Andy's, where compassionate care, expertise, and respite converge Its specialised services

cater to the intricate requirements of children with complex medical needs and disabilities, providing families with the peace of mind that their loved ones are receiving exceptional care Allowah’s extensive experience and comprehensive approach make it an invaluable asset in the lives of those who depend on its existence

At Allowah, we understand the rollercoaster ride that can come with having a child with severe disability or medical situation. We walk alongside parents, carers and families and can provide ongoing support when things are hard. Through our Family Liaison, Chaplain, our peer-topeer support group MyTime, or the everyday informal support of our staff, Allowah seeks to be there for you and your child.

Find

Allowah Presbyterian Children's Hospital & Disability Support Services

8 Perry Street, Dundas Valley NSW 2117 02 8877 3400 | admin@allowah org au

“We have a very sick child, but we’ve got confidence in knowing that she is being really well cared for and it gives us the chance to take a break and to live our lives with a very sick child.”