Source Kids Spring 2023

THE ROAD TO DIAGNOSIS

WHAT TO DO WHILE YOU’RE WAITING PROCESSING AND SHARING THE NEWS YOUR STORIES

Accessible playgrounds

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.

Well, hello Spring! The season we all seem to long for as a country. Where the weather starts to warm up, but it isn’t too hot. Where the flowers start to blossom, with all the gorgeous floral tones around. And where everyone seems to have a little more spring in their step and renewed energy for the months ahead.

This issue we focus on diagnosis. It’s that day/time that is etched into the minds of so many special needs parents; the moment when nothing changes but everything changes at the same time. Dreams are lost and new realities become the focus. I for one will forever remember the exact street, the busy traffic on that road, the park opposite and the feelings I had at the time, when we learned our daughter had the rare genetic condition of Angelman syndrome. We are all at a different point of our diagnosis journey; it could have been this week, two years ago, ten or thirty years, but it’s a moment in time we all have in common and an important milestone for all of us.

We wanted to explore this topic in a little more detail, so this issue we work through early diagnosis, the diagnostic process, supports available for you through the process, what to do while you’re waiting for a diagnosis (or if there is no diagnosis), and importantly, processing the news. And we chat to some incredible families about their stories.

We hope you enjoy our Spring issue, it is loaded with other fabulous content too, including developing life skills for young adults, school camps and excursions, accessible playgrounds and everything you need to know about executive functioning.

Enjoy the read and much love,

LEARN IT PROGRAMS – LEGO LOOT

Learn it Programs' ‘My Loot Box’ is a monthly, curated LEGO & sensory subscription box for kids! Designed by a Melbourne mum with her neurodiverse child in mind, My Loot Box is suitable for children over 5 years and their families. The monthly Loot includes a variety of LEGO, as well as minifigures, a fun fidget item, a sensory craft or play item. instagram.com/mylootboxau facebook.com/learnitprograms learnitprograms.com.au

SAY GOODBYE TO ODD SOCKS!

Ankle or crew socks with dots, colour-coded by size so you can instantly tell whose socks are whose. 80% cotton with spandex, plus soft seams & gentle grips - great for sensory needs. Never worry about looking for a pair again, we love the sound of that! dotonasock.com.au

EXPLORE LEARN MOVE –EMOTION RESOURCES

AVAILABLE IN AUSLAN

WHAT PARAMEDICS DO

What Paramedics Do is an inclusive book written by Critical Care Paramedic, Amy Gomes, designed to help reduce medical anxiety and teach kids about 000, while also raising money for the charity Heart of the Nation. The book includes a linked reading with Greg Page (Original Yellow Wiggle) and an Auslan component with Mikey Webb. onelittleheart.com.au

Downloadable free posters to guide your child with understanding their emotions and behaviours from Explore Learn Move. Supporting children, parents and professionals in early years settings to encourage children’s development with their online Allied Health Hub. explorelearnmove.com.au

The Plexa Series Bed

Designed to provide safe & comfortable nights.

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READ BY CHILDREN

MEDITATE WITH FRIENDS

Meditate with Friends is the #1 app for children, helping them with sleep and to start their mindfulness journey. Discover a happier, healthier family dynamic through these meditations and guided sleep stories voiced FOR children BY children. Try for free. meditatewithfriends.com.au

SOURCE KIDS ASSISTIVE TECH EGUIDE

From beds and bikes to standers and strollers, wheelchairs, walkers and more, the Source Kids Assistive Tech eGuide is here! A comprehensive list of AT products in one handy and accessible online resource. Includes useful articles including tips for writing goals for your AT.

DUSTY’S MONSTER

A book written by a loving father about his daughter’s journey with autism.

Dusty’s Monster is an analogy of a child’s daily struggle to comprehend sensory elements. Too tired, too hot or too cold... these elements are represented by a monster whose strength and impact grows as the child’s frustration does. It’s also a story of love and understanding, learning and family, childhood and growth. dustysmonster.com

MADIE FIDGETS –UNIQUELY FUN FIDGETS

Be intrigued by the amazing 3d printed articulated fidgets by Madie Fidgets! Inspired by her autistic daughter, mum Rhi has created a wide range of fidgets, animals and critters to help with regulation, concentration, creative and imaginative play. madiefidgets.com.au

DIAGNOSIS

Over the next few pages we’re starting at the very beginning and looking at the different aspects of the early days of a child’s diagnosis. Read on for insights and info on: the road to diagnosis, what to do while you’re waiting, sharing the news, support services and more.

The road to receiving a diagnosis for a child is paved with stories as diverse as the children, symptoms and diagnoses themselves. There are some common threads and pathways that are shared across experiences however and this article will take you through the steps you can take when you suspect something is not quite ‘right’ with your child; including the people to talk to, the professionals involved, and the different investigations that may happen.

For families who receive the lifechanging news that their child has a disability, we know that understanding and addressing a child’s unique needs can be a complex and emotionally charged process, but there are frameworks out there to help. And while receiving an official diagnosis may be scary, it will help you navigate to the right supports and interventions to help your child reach their full potential.

Discovering potential challenges before birth or shortly after

For some parents, the journey towards a diagnosis begins before their child is even born.

EARLY DIAGNOSIS QUEST FOR ANSWERS

Advances in medical technology, such as prenatal testing have made it possible to detect certain conditions during pregnancy. Routine ultrasound scans can provide valuable information about a child’s in-utero development and detect any abnormalities or markers for genetic disorders. Additionally, genetic screenings, such as amniocentesis or chorionic villus sampling (CVS), can identify chromosomal abnormalities or genetic conditions.

Receiving a pre-birth diagnosis allows you to make informed decisions about medical interventions, early interventions, and therapies. It also offers the opportunity to connect with specialists and support networks before your child is born, ensuring a smoother transition and access to appropriate resources once the baby arrives.

A diagnosis during a pregnancy can be a hugely scary time. Connecting with support groups, counsellors, or other parents who have been in a similar situation can provide comfort, guidance, and an opportunity to process all the very valid emotions you’re likely to be experiencing.

Sometimes, complications or unusual behaviours are observed very shortly after birth, or something may be discovered through the routine newborn blood spot screening, also known as the heel prick test.

The process involves taking a small blood sample from your baby’s heel. Typically, the test is conducted when the baby is between 48 and 72 hours old, but it can be done earlier or later if necessary. A healthcare professional, usually a midwife or nurse, performs the procedure and the minute amount of blood collected will be sent away to be analysed by a laboratory.

The conditions screened for can vary slightly between different Australian states or territories, but they generally include metabolic, endocrine, and genetic disorders.

If your child is diagnosed with a genetic condition, it may be helpful to speak to a genetic counsellor – a health professional qualified in both counselling and genetics. As well as providing emotional support, they can help you to understand a condition and what causes it, how it is inherited (if it is), and what a diagnosis means for your child’s health and development, and for your family.

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In contrast to the above, some children may not exhibit signs that something is different until weeks, months or even years have passed. As a parent or caregiver, you may notice delays in key milestones, speech and language development, motor skills, social interactions, or academic progress. Or perhaps you just have a feeling that something is not quite right.

Your intuition can be an immensely important factor in deciding to take action. As a parent, you are often the first to notice if something seems different about your child’s development; trust your instincts and pay attention to any concerns you have. Document your observations and make a list of specific behaviours or developmental milestones that you’re worried about. Identifying potential issues and seeking a professional evaluation are essential steps towards obtaining a diagnosis and if it’s just a gut feeling – then go with it!

When issues arise later

THE DIAGNOSTIC PROCESS

The road to your child’s diagnosis will most likely involve a comprehensive evaluation process that combines observations, assessments, and medical examinations. Healthcare professionals including geneticists, paediatricians, psychologists, neurologists, and occupational therapists, among others, play vital roles in conducting thorough assessments to understand your child’s strengths, weaknesses, and unique needs. This multidisciplinary approach ensures a comprehensive evaluation and assists in making an accurate diagnosis.

In terms of the order things may happen:

First, schedule an appointment with your child’s GP to discuss your concerns. GPs are well-equipped to assess your child’s overall health and development. During the appointment, share your observations, provide a documented list of your concerns if you have one, and discuss any family medical history that may be relevant. The GP may conduct initial screenings and assessments or refer you to a specialist.

In some cases, diagnostic tests or screenings, such as cognitive or behavioural assessments, genetic tests, or imaging studies, may be recommended to gather additional information.

A referral to a developmental paediatrician is a common next step.

The role of a DEVELOPMENTAL PAEDIATRICIAN

A developmental paediatrician specialises in child development and behavioural issues. Their indepth knowledge of typical and atypical patterns of child growth and development enables them to assess and diagnose a wide range of developmental disorders.

During an assessment of your child, they gather information from multiple sources, including interviews with parents/caregivers, observations of the child, and standardised tests/ questionnaires.

Developmental paediatricians are skilled in differentiating between various developmental disorders. They consider a child’s symptoms, behaviours, and developmental history to determine the most accurate diagnosis. They will often work as part of a multidisciplinary team, collaborating with other

professionals such as psychologists, speech therapists, occupational therapists, and educational specialists. This collaboration allows for a comprehensive evaluation and ensures a holistic understanding of your child’s strengths and challenges. Input from various specialists helps in making a more accurate diagnosis and designing a tailored intervention plan.

Developmental paediatricians are well-connected within the healthcare system and can provide referrals to other specialists or services as needed. They can help you access appropriate therapies, early intervention programs, and support services. They often serve as a central point of coordination, ensuring that your child receives comprehensive care and that all relevant professionals are involved a treatment and support plan.

Communication IS KEY

Open and honest communication with healthcare providers is essential throughout the diagnostic process. By maintaining open lines of communication and sharing concerns, parents can contribute to a more accurate diagnosis. You should ask questions, share observations, and actively participate in discussions about the diagnosis and its implications. Seeking a second opinion can also be valuable, providing you with different perspectives and ensuring thorough consideration of all possibilities.

Supporting you through the process

Here in Australia there are a number of different government agencies and initiatives to support you at different stages throughout the process of your child’s diagnosis. Some of the key ones are as follows:

MEDICARE

While it doesn’t directly diagnose disabilities, Medicare covers medical services that may be required during the diagnostic process. Medicare can help cover costs for visits to GPs, paediatricians, psychologists, and other healthcare professionals involved in the assessment and diagnosis of your child’s condition.

STATE AND TERRITORY DISABILITY SERVICES

Each state and territory has its own disability services department or agency. These organisations provide a range of disability services, including information, support, and referral to relevant local services. They can assist in navigating the local disability support system and connect you with specific programs and resources available in your area.

NATIONAL DISABILITY INSURANCE SCHEME (NDIS)

The NDIS is a national scheme that provides support and funding for individuals with disabilities. It aims to empower people with disabilities to achieve their goals and improve their overall quality of life. Once your child receives a diagnosis, you can apply for NDIS funding. If your

child is eligible, they will receive a personalised plan that outlines the supports and services they need, such as therapy, equipment, and personal care. The NDIS can also connect you with local service providers and help coordinate your child’s support network.

EARLY CHILDHOOD APPROACH (ECA)

The Early Childhood Approach is a part of the NDIS originally for children aged 0-7, but now expanding to include children up to age 9. It focuses on early intervention to support children with developmental delays or disabilities.

Children younger than 6 do not need a diagnosis to get support through the early childhood approach where there are concerns about their development.

The ECA aims to provide timely and targetedsupport, delivered by The ECA partners work to maximise a child’s developmental potential during their critical early years. ECA partners with families to create individualised plans and connects them with appropriate early intervention services in their community.

For more suggestions of support services for your child & your family, turn to page 21.

Remember, although this is a scary time for your family, there are many others who have walked a not dissimilar path and emerged on the other side (look at us all here at Source Kids for example!) - a diagnosis is not the end of the road but rather the beginning of a new chapter filled with hope and possibilities.

The Joy to Move Freely

As market leaders in special needs equipment in Australia, Astris PME carries an extensive range of Assistive Technology 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!

What to do while WAITING FOR A DIAGNOSIS

Our friends at Kiind in WA have told us that their members report the following as being helpful to them.

1 | If you are based in WA* join Kiind (kiind.com.au/becomea-member/family) (it’s free) and speak with a Peer Navigator who can answer your questions, provide you with guidance and information as well as connect you with other families in similar circumstances.

*Turn to page 21 for some other sources of support around the country.

2 | Continue to work with your GP and allied health professionals as your child’s symptoms evolve. Seek a second opinion if you feel it’s necessary.

3 | Ask about Medicare rebates. Ask your GP about accessing therapy services such as a speech therapist, occupational therapist, physiotherapist or psychologist using Medicare rebates.

4 | Connect with others. Join an online or face-to-face peer support group related to your child’s symptoms. Peer support groups can provide an invaluable, judgement-free place for parents and carers to connect with one another, share knowledge, insights, ask questions and seek advice.

5 | Join an early childhood playgroup. If your child is pre-school age, there are many playgroups across the state to support parents of children who are showing signs of developmental delay, disability, behavioural difficulties and more. Playgroups provide an excellent opportunity to connect with other parents, develop friendships and helpful networks.

6 | Join a toy library. Toys help children to develop skills and there are many toy libraries around the country which operate in the same way as a traditional book lending library. To find a toy library near you, simply google ‘toy library’ and your suburb.

7 | Enrol in parent workshops and information sessions aligned to the needs of your child. Many are free or low-cost and provide guidance and support across a wide range of areas. Carer Gateway (carergateway.gov.au) and Reimagine Australia (reimagine.org.au) both provide a good starting point.

8 | Access opportunities in the community. In WA, a good starting point is to sign up to Kiind’s weekly What’s on activity and event guide (kiind.com.au/whats-on), filled with free or low-cost programs, workshops, events and activities for the whole family.

You can also check out the events calendar of your local Council, library, church or leisure centre to find out what’s on each month such as story time, music, dance and craft activities.

9 | Seek support. If you are experiencing feelings of stress, grief, depression or isolation, understand that you are not alone. Speak to your GP, a counsellor or check out ‘Counselling and mental health’ in the Useful Organisations directory (kiind.com.au/ find-useful-organisations) of the Kiind website – you will find many national organisations listed alongside the WA state-based ones.

10 | Start a record-keeping journey including notes about observed behaviours, symptoms, abilities, ways of communicating, reaction to treatment or medication(s) and issues that you’d like to discuss with your child’s doctor the next time you meet.

If you’re based in WA and need help to navigate the process of your child’s diagnosis, you can speak with one of Kiind’s knowledgeable Peer Navigators for practical guidance, information and support on tel: (08) 6164 9806 or email: support@kiind.com.au

Seeking a diagnosis often takes time but there are things that you can do in the interim to help you stay strong, connected and supported.

When there are NO ANSWERS

SWAN Australia is the national peak not-for-profit organisation representing approximately 2500 children born every year in our country without a diagnosis, and around 1 in 12 children born with a rare genetic condition. This equates to about 350,000 children across Australia at any one time.

Alongside the provision of essential tools and knowledge for families, SWAN works to increase community awareness and understanding of the impact and prevalence of undiagnosed and rare genetic conditions. The organisation reduces the isolation and emotional strain of raising a child with health conditions and/or disability by helping SWAN families connect, and SWAN advocates for improved health and disability supports, free and equitable access to genetic and genomic testing, and increased research funding to ensure more children can be diagnosed.

Unfortunately, when children seek help from geneticists, only 30-50 per cent of them will receive a diagnosis. This can be especially disheartening for families when the child has a progressive or life-limiting condition. The average time to diagnosis is 5-9 years, and during the process, up to 40% of rare disease patients receive at least one misdiagnosis.

Heather Renton founded SWAN Australia in 2012. She was inspired by her daughter, who has the neurodevelopmental disorder, FOXP1 Syndrome. Before her daughter’s diagnosis, Heather was looking for a support group. There was none. She discovered SWAN organisations in the UK and USA and decided to start a

chapter in Australia. “My mother brought me up with the attitude that if you don’t like something, you should try and do something about it, not simply whinge!” Heather says.

Heather acknowledges the weight of “not knowing” on families. It can be an isolating and frightening experience when parents are unsure why their child’s development is not progressing as expected. The absence of a diagnosis raises numerous questions and concerns, such as the child’s future abilities, the hereditary aspect of the condition, available treatments, and the potential progression of the condition.

Furthermore, the lack of a diagnosis limits families’ access to support groups, information about what lies ahead, reproductive choices, and options for participation in clinical trials.

Diagnosing children with rare genetic conditions is challenging because DNA can be altered in various ways, and even the most advanced tests cannot detect all of these alterations.

Additionally, some children may have multiple genetic conditions, further complicating the diagnosis process as they exhibit a blend of different symptoms.

It is important to note that not all children with unexplained health or developmental issues will have a genetic cause. Families often struggle to comprehend that, despite access to advanced technologies, there are instances where answers simply cannot be found.

By Heather Renton, Founder of SWAN Australia

SWAN’s support programs include:

• A dedicated telephone support and information line

• Facebook Messenger, email and SMS support

• Access to a Telehealth Patient Pathways Nurse

• Face-to-face catch-ups

• Virtual catch-ups

• Virtual Meet the Experts information presentations

• Connection to other SWAN families caring for a child with the same rare genetic condition

• Family gathering

• Parent groups

• Siblings’ program

Visit swanaus.org.au for more info and to access the wealth of resources available.

The average time to diagnosis is 5-9 years, and during the process, up to 40% of rare disease patients receive at least one misdiagnosis.

In a world where finding answers can be overwhelming and isolating, Syndromes Without a Name Australia stands as a guiding light for families navigating the realm of undiagnosed genetic conditions.

Atlas McNeil Healthcare provides medical supplies and tailored solutions with personalised service to Home Care and Community Providers, Healthcare Professionals and Support Coordinators, NDIS Participants and Carers.

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The AMHC team always treats us with dignity and understanding. There were times I was so frazzled I didn’t know what I needed when I phoned, but after a 10 minute debrief on life, we were able to not only find a suitable product, but really a solution to Maxi’s needs at the time. In recent times AMHC were invaluable in the NDIS process, they were able to assist with quotes for my plan review, help me understand value for money and stretch my son’s budget to ensure Maxi doesn’t go without his consumables we can’t live without. I personally recommend Atlas McNeil Community if you’re looking for a real-people service with someone who gets you.

PROCESSING THE NEWS PROCESSING THE NEWS

Your reaction & feelings

It’s no exaggeration that your world tilts on its axis when you receive a disability diagnosis for your child. Whether the news comes prior to their birth, just after their birth or after a long battle to find what the issue is, a whirlwind of emotions is stirred up, triggering what amounts to a grieving process. Shock, disbelief, anger, guilt, sadness…these are all valid things to be feeling as you come to terms with the fact that the life you envisaged for your child, and your family, is quite possibly going to look quite different to that which you imagined.

Grieving for your child doesn’t mean that you do not love and appreciate them as they are; it is simply a natural and normal way of coping and adjusting to the unexpected.

The grief and other emotions you may

feel will most likely not be linear, but rather a series of stages that you may cycle through at different times. These stages may include denial, anger, bargaining, depression, and eventually acceptance. By recognising and accepting these stages, you can begin to work through your emotions and gradually find peace and resilience with your new ‘normal’.

ACCESS INFORMATION & SERVICES

It quickly becomes obvious that knowledge is power when it comes to parenting a child with a disability. And in the early days of diagnosis, make a start by gathering information from a range of sources. Educate yourself about your child’s condition, find out about the services that can help, and uncover practical strategies to nurture their growth & development. Make a start with some resources on page 21. Also subscribe to Source Kids and keep an eye on our website for constant updates and info to support you on your journey!

REACH OUT

You may feel incredibly isolated when you first receive a diagnosis for your child, but there are others out there that can help you. Seeking support from parents & carers who have gone through similar experiences can be immensely helpful, not only in knowledge sharing , but also for much needed emotional support. Search for online groups and forums that provide spaces where you can connect with parents & carers who understand the challenges you’re facing. As you build your network you’ll find that there are lots of real world meet ups to help you find friendly faces too.

Building this network of support with family, friends, and professionals who are knowledgeable about the child’s disability can create a strong foundation for navigating the road ahead. Your ‘team’ can offer emotional support, lend a helping hand when needed (even if it’s just a virtual one!), and collaborate on finding the best resources and interventions for your child.

Diagnosis Processing the news: telling others

In addition to dealing with your own response to your child’s diagnosis, there is the added complexity of working out how, when and what to tell others. There’s no right or wrong approach to this - every family will have their own preferences and comfort levels in what to share. You may choose to be open and educate others about your child’s condition, while others may prefer to keep it more private. Do what feels right for you and in your own time.

The following are some general tips that may work for you if you decide to share the news with close friends & family:

Choose the right time and place

Finding the right time and place to share the news is essential. Pick a calm and comfortable setting where everyone can have an open and uninterrupted conversation. It’s also important to choose a time when you and your loved ones can dedicate sufficient attention and emotional energy to the discussion.

Be open and honest

When sharing the diagnosis, be open and honest about your child’s condition. Explain what it means, how it may affect your child’s life, and how it impacts your family. Emphasise that while challenges may exist, your child is still the same unique and lovable individual they have always been. Of course, if you don’t have answers or don’t want to discuss a certain element – let people know your boundaries.

Provide information and resources

To help others understand your child’s condition better, provide them with reliable information and resources. This could include brochures, websites, or books that explain the disability in simple terms. Encourage them to ask questions and offer to provide further information or connect them with relevant support organisations.

IT IS IMPORTANT THAT CHILDREN HAVE ACCURATE INFORMATION ABOUT THEIR SIBLING’S DIAGNOSIS.

• Be clear and concise and honest, using age-appropriate language and concepts.

• Provide the information necessary to convey the ‘facts’ as they pertain to the sibling’s life, e.g. what the child with disability requires and why e.g. any equipment or supporting aides, modes of communication, environmental changes, or other support, and discuss any altered appearance or behaviours displayed.

• Ask your child what they think their sibling’s diagnosis means and ensure that their understanding is accurate.

• Make use of books and other age-appropriate resources

• Offer ways that your child can help if they choose to, making it clear that it is an option.

Be patient and allow for processing time

Everyone processes information differently, and your loved ones may need time to absorb and understand the news. Be patient and understanding if their reactions vary or if they need some time to come to terms with the diagnosis. Continue to provide support and keep the lines of communication open.

Whichever way you decide to approach this, do what feels right for your family, and prioritise the needs of your child. Open communication, patience, and respect for personal boundaries can help navigate relationships and build a supportive network.

• Provide an opportunity for your child to meet peers who have a sibling with the same diagnosis.

• Convey the importance of your relationship with your child, regardless of their sibling’s needs. Schedule alone time with them if you can.

• Ensure that your child knows that there are no ‘correct’ feelings or thoughts they may be having and that you are always willing to talk with them.

Sharing the news with siblings Sharing the news with school

EACH STATE WILL HAVE ITS OWN PROCEDURES REGARDING NOTIFICATION OF A VERIFIED DISABILITY. HERE ARE SOME GENERAL TIPS

Notify your child’s school about the diagnosis, ensuring they have a comprehensive understanding of your child’s needs. Meet with the school staff, including teachers, counsellors, and administrators, to discuss appropriate accommodations and support strategies.

Consider how you may want to share the diagnosis with your child’s class and friendship groups.

Encourage open communication between the school and your family, providing updates on your child’s progress and addressing any concerns.

Seek support from local support groups or organisations that specialise in your child’s disability, as they can offer valuable resources and advice.

Spring into Action

Paediatric Assistive Technology for Outdoor Fun!

Spring is here, and it’s time to enjoy the great outdoors! Explore our range of paediatric assistive technology designed to make outdoor play more accessible and enjoyable.

From adaptive bikes to trikes and recreational equipment, ILS Kids has the perfect gear for every child, empowering kids of all abilities to join in on outdoor adventures.

To learn more about ILS Kids, visit ilskids.com.au or check out our free eBook.

Parenting a child with a disability can sometimes feel lonely, especially if your child has just been diagnosed, but we can assure you that there are people out there who ‘get it’. Here’s a quick overview of just a few of the groups, gatherings and organisations to help build bonds and support networks for you and your child.

CARERS AUSTRALIA

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

REIMAGINE AUSTRALIA

Formerly known as Early Childhood Intervention Australia (ECIA), Reimagine has been the leading Australian body for early childhood outcomes for young children with a developmental delay or a disability and their families, since 1986. There’s a super-helpful section for families on their website for information & resources if your child needs to access Early Intervention services. reimagine.org.au

KIIND

Formerly Kalparrin, Kiind provide families in Western Australia with practical assistance, emotional support, connection to other families and help to find the most appropriate services and supports for children. kiind.com.au

SOURCE MAMA

Our very own tribe of mamas on the disability parenting track. We are here to unite, empower, inspire and become the largest pride of lionesses ever to have walked (or often in our case – crawled) across the earth! sourcemama.com.au

SYNDROMES WITHOUT A NAME

If you’re struggling to get a diagnosis for your child, SWAN provides information and support to families caring for a child with an undiagnosed or rare genetic condition. There’s a Facebook group and they also hold awareness/family gatherings, morning tea meet-ups and other social events in Victoria and Queensland.

swanaus.org.au | 0404 280 441

Support groups and services

DOWN SYNDROME AUSTRALIA

All state and territory Down syndrome associations offer support, encouragement, information and resources for family members, carers and friends. downsyndrome.org.au

BENEVOLENT SOCIETY

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

The Benevolent Society is also a Carer Gateway provider - which is the Australian Government’s national carer hub providing reliable services, supports and advice specifically for carers. carergateway.gov.au

CEREBRAL PALSY ALLIANCE

For more than 75 years, Cerebral Palsy Alliance has been provided essential therapy, services, support, programs, advocacy, equipment and technology for people with cerebral palsy and similar disabilities. Take a look at their website to discover the multitude of ways they can support families and their children diagnosed with cerebral palsy. cerebralpalsy.org.au

PLAYGROUP AUSTRALIA – PLAYCONNECT & PLAY TOGETHER

PlayConnect Playgroups are designed for families of children aged 0-6 years who have unique needs associated with having an Autism Spectrum Disorder or autism- like characteristics in communication, behaviour or social skills. playgroupaustralia.org.au/nationalprograms/play-together

MY TIME

MyTime groups are a place to socialise, to discuss, to get information, and to support and be supported by other carers. Find your local group at mytime.net. au/groups

AUTISM AWARENESS AUSTRALIA

Our friends at Autism Awareness Australia ensure autistic individuals, and their families, have access to free, credible, evidence-based information, resources and tools to empower them to support themselves or their loved ones on the spectrum. They also provide targeted educational programs to families, professionals and the broader community. autismawareness.com.au

SIBLINGS AUSTRALIA

The go to resource for support, resources and advice for siblings of children with a disability. Siblings Australia’s aim is to maximise the wellbeing of siblings & build their capacity to navigate life’s journey. siblingsaustralia.org.au

FACEBOOK GROUPS TO CHECK OUT:

NDIS Grassroots Discussion

NDIS Community Special Needs Kids

Australia

Cerebral Palsy Parents Australia

T21 Mum Australia Network

Autism Parents Australia

Parents of Children With Cerebral Palsy (Australia)

ASD/Autism Support Group for Aussie Mums

Fragile X Association of Australia Group

Kiind Family Members

Source Mama

Ask a

PLAN MANAGER! PLAN MANAGER!

Here at Leap in! we understand that navigating some of the key NDIS early childhood terminology, roles and approaches can be tricky! There’s also been a lot of changes recently, which can be difficult to keep track of. Today, we ask Leap in! plan manager Tabitha to unpack the early childhood approach, early connections and more.

QWhat is the early childhood approach?

The NDIS early childhood approach (ECA) provides support to children aged under nine with developmental delay or disability to get the best possible start in life.

The ECA aims to connect families with the right supports and services so children develop skills to take part in everyday activities and build strong foundations for their future.

Children don’t need a diagnosis or to apply for the NDIS to access supports under the early childhood approach. Some children and their families can access early connections and supports without applying for the NDIS. Others will be assisted with an NDIS access request, depending on individual needs.

QWhat is an early childhood partner?

Experienced Leap in! plan manager Tabitha is on hand to help. Tabitha answers some frequently asked questions so you know what to expect if you’re exploring options for someone in your family or care.

Early childhood partners (ECPs) are local professional organisations the NDIS funds to deliver the early childhood approach. They work with children younger than 6 with developmental concerns and younger than 9 with disability and their families. Early childhood partners work to understand a child’s needs and will provide connections to supports and services that best meet the child’s needs. These supports and services are called ‘early connections’.

Providing support as early as possible in a child’s development is the ideal way to ensure they achieve the best possible outcomes throughout their life.

The early childhood approach, early connections and more.

ECP teams often include occupational therapists, psychologists, physiotherapists, speech therapists and other relevant allied health professionals.

What recent changes were made to the early childhood approach?

The NDIS early childhood approach previously provided support to children under the age of 7 and their families. Since 1 July 2023, there have been changes to expand the age range to include children under the age of 9. This transition will take place over the next 2 years.

The extension of the age range ensures that children and their families will receive continued support from an early childhood partner (ECP) during and after their transition to primary school.

The specific details of the transition are as follows.

• Children who are already on the NDIS and turn 7 after 1 July 2023 will now remain with their early childhood partner until they turn 9 if they require support up to this age.

• Children under the age of 9 who access the NDIS will now be supported

by an early childhood partner (rather than a local area coordinator).

• Children younger than 6 don’t need a diagnosis, and children will be eligible to stay with an ECP if they are younger than 9 and have a diagnosed disability.

What can I expect from an early childhood partner?

An ECP will initially meet with you and your family and chat about the following:

• Any concerns about your child’s development

• Priorities and goals for the child

• How you currently support the child and where more support may be needed

• Information from available screening tools, assessments or reports

• Any early childhood supports currently received and how well they meet your needs.

An ECP uses observation in familiar settings to understand how the child plays, communicates and helps take care of themselves. They may also use assessment tools to learn more about the child’s development.

This information is used to assess the child’s support needs and determine the next steps.

QWhat are ‘early connections’?

Early connections are supports and information provided to children under nine and their families to develop capacity and maximise the child’s opportunities.

Children do not need a diagnosis to be eligible for early connections and supports can be provided without accessing the NDIS. These can include connections to:

• Mainstream (government) and community services such as early childhood services, health services and family support services

• Practical information that is relevant to the child’s development

• Other families

• Supports

Q Q Q• Applying to the NDIS.

Accessing early connections through early childhood partners.

If you have concerns about your child’s development, the NDIS recommends speaking first to a health or education professional such as your GP, occupational therapist, child health care nurse or early childhood educator.

They can put you in contact with an early childhood partner (ECP), who has experience and clinical expertise in working with young children with developmental concerns or disability and their families. You can also contact an ECP yourself. No referral or diagnosis is needed.

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

How did you first become aware that there might be a concern about your child’s health or development? What were the early signs that led you to seek a diagnosis?

Our daughter, Marley, was diagnosed at only a week old. After birth, Marley had quite a few “small” issues whilst in special care such as she couldn’t feed, she had trouble breathing at birth, jaundice, a stridor which turned out to be tracheomalacia. We would tackle one issue and something else would pop up. We were assigned an amazing paediatrician (who we still see today) who suggested we start some genetic testing just to rule out a few conditions.

MARLEY’S STORY

MARLEY’S STORY

Can you tell us a bit about the diagnosis your child received?

What does it mean, and how does it affect your child’s life?

Marley was diagnosed with an unbalanced translocation of chromosomes 11 and 4, more technically known as Trisomy 5, Monosomy 11. We were told that she would probably walk, probably talk but that she would have severe global

developmental delay and would always need full time care even into adulthood.

We were sent for testing of every one of her major organs and found she had an ASD in her heart that needed surgical repair. Marley also has a mild astigmatism with her sight, mild hearing loss and very slow growth over her lifetime.

Now, she is a funny, stubborn, cheeky teenager who can walk independently (but

she didn’t start until she was 6), she is nonverbal but communicates very well using a combination of sign language and a device. She has had trouble sleeping in the past, but we’ve now found solutions to that. She loves people and life in general, and is a happy little girl.

How has the diagnosis impacted your family dynamics and daily routines? Have there been any specific challenges or adjustments you’ve had to make to support your child?

Our life has taken a very different path to what we expected. Since we found out I was a carrier of Marley’s condition we

Thanks to mum, Shanelle, for answering our questions and sharing Marley’s story with us…

had to do IVF to conceive our to two other amazing children, Kai and Clio.

As Marley is very set in her routine we live a very structured family life; we don’t take many trips and holidays, and we have modified our home to accommodate her needs.

My husband and I have had to learn to rely on each other and support each other when one of us isn’t having the best day. We have learnt to really focus on the simple pleasures of life, and we have two of the most caring, kind and empathetic children you will ever meet. I have also built my business around my knowledge of disability which is a direct result of all the years of therapies we’ve done with Marley.

What kinds of treatments, therapies, or interventions has your child been receiving? How have these approaches helped your child’s development and well-being?

We have done so many different therapies: physio, OT, speech, equine… with each of them having different benefits. The most impactful therapy we’ve done has been communication, and I use this instead of the term speech therapy. Once a child can communicate effectively, they are so much happier.

We went from sign language to PECS and now LAMP. No one form of assistive tech is right for everyone. We found that by listening to Marley and really tapping into her strengths we’ve found the right combination for her to be happy and communicate effectively.

We also found that weekly therapy sessions didn’t work well for Marley. We had far more success by spreading out the sessions and getting activities/exercises to add to her daily life.

Lastly, I think that parental training is highly beneficial. I did professional training for both PECS and LAMP and have found that a wonderful benefit in helping Marley to progress and develop.

As a parent, what are your primary concerns and hopes for your child’s future in light of their diagnosis? How can those around you offer support during this time?

My biggest long-term concern is who will care for Marley when we can no longer do so, so making plans for the future is always at the back of my mind. But ultimately we just want her to be happy and be loved and be supported by people who genuinely love her and want to be around her. She will thrive being in this environment.

Our circle of friends has definitely decreased in size since having Marley as we are restricted with things we can participate in. A lot of people say they just don’t know what to do, so they do nothing. I feel people around us can support us by being there, staying in touch even when we have to say no to lots of things, spend time with us and Marley so she is comfortable with them and not anxious. Often just having someone who is comfortable with our child makes life easier for us. Ask us what is convenient for Marley and our family rather than making plans we cannot make work. And make us feel comfortable by listening when we need to vent or cry, don’t try and solve things - just allow us to be in our feelings when we need to let go. This is a tough road and even the strongest have their down days.

We went from sign language to PECS and now LAMP. No one form of assistive tech is right for everyone.

* Diagnosis: Autism

EDDIE’S STORY EDDIE’S STORY

Although pursuing and receiving an autism diagnosis can be challenging, many families will tell you how grateful they are for the clarity and support a diagnosis brings. Vasily shares his journey with his son Eddie and his advice for other autism families and those who are thinking about an autism diagnosis.

Eddie was progressing as any other child would until he was 16 months old. We already had a basic understanding of developmental milestones, thanks to our experience with our older daughter who is now seven. However, at 16 months, we noticed concerning changes in Eddie. He stopped reacting to his name, began lining up his toys meticulously, and would be showing interest in repetitive behaviours, such as pressing the same button countless time on his toy. He started tip toe walking and would entertain himself by spinning around and flapping hands. He ceased pointing at objects and began guiding his mother’s hand to indicate or reach for things he wanted. Words that he had previously mastered were suddenly

forgotten. Today, we know these were early indicators of autism, but at that time, we perceived them as quirks and simply part of Eddie’s unique developmental path. We did voice our worries to our general practitioner. However, we were reassured that Eddie was too young for any type of diagnosis and that his slower development was typical for boys compared to girls. We were assured that boys are just slower than girls and that Eddie does not look like a typical autistic child who is not responding to any

stimuli. And as for our concerns, as parents, we were just being way too paranoid and should just relax or take a vacation.

Armed with false reassurance from my GP, we took the leap and reached

out to autism parent support groups on social media. There, we received invaluable advice from fellow parents who emphasised the importance of finding a trustworthy developmental paediatrician. This doctor would not only guide us throughout the process but also help us assemble an appropriate multidisciplinary support team for our child.

Fortunately, luck was on our side, and we discovered an incredible paediatrician. Through multiple visits, formal assessments, careful observations, and the reports from therapy providers, this remarkable professional was able to diagnose Eddie accurately. We continue to visit our paediatrician every six months for general updates and discussions on the next steps in our journey.

Coming to terms with a child’s diagnosis is often the most challenging part for parents, and it was no different for us. As a father, I managed to cope more effectively at first, thanks in large part to the wonderful support I received from my back than employer at financial services company and work colleagues, to whom I shared our family situation and Eddie’s diagnosis. The diagnosis acceptance, however, was significantly more difficult for my wife, who spent several weeks in somewhat ‘denial’. She tried to persuade me and others that Eddie’s signs were normal and something he would eventually outgrow. When confronting an autism diagnosis, it often feels like a solitary journey for parents, however we learnt that being open about our son’s disability helped us to come with terms a lot easier and meet incredible and caring people along the way.

It’s vitally important to cast aside fear and savour every moment with our children. While much remains unknown about autism’s causes and reasons, one thing we do know is that children with autism are extraordinary. They continually surprise us with their amazing, often hidden, talents!

For more free and evidence-based autism information and support, visit autismawareness.com.au

external

While much remains unknown about autism’s causes and reasons, one thing we do know is that children with autism are extraordinary.

Q&A DADS and disability DADS and disability

Sean is dad to 3 children, including Harrison who has cerebral palsy. We sat down to chat about his insights and experiences on raising a child with a disability and what he’s learnt so far.

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

Sean: The biggest challenge is trying to be as supportive to my wife Pay Pay as I possibly can, as she’s the one who has to juggle therapies, doctors’ appointments, school drop-off/pick-up, breakfast, lunch, dinner, snacks, activities, liaising with charities and support workers, specialists –the list goes on and on!

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

We work together and try to mix up which parent takes which children to sports, therapy or outings. Obviously working full-time, it makes it harder for me to attend the weekday 9-5 appointments, but we always try to involve all the kids in after school activities together.

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

Our main focus is the kids, both our child with the disability and the others, but I do

have an outlet in the form of music (I play in a band that the kids also occasionally get to come along to watch). Working fulltime also means I’m around other adults 8 hours a day which does give me some form of respite.

How do you prepare your child for independence and adulthood?

We try to normalise our son’s disability as much as possible, and we encourage him to do as much as he can without our assistance. We are extremely lucky that he is a very headstrong and happy little trooper which hopefully will be beneficial in the future.

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

I worry about his peers and how he could be the target of teasing because of his disability. At this stage there has been no indication of this, and even though he’s only just turned 6, he seems to have a good little group around him. Added to that is the additional support by all the teachers involved at his school, most of whom have known him since a baby. This is reassuring.

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

Listen. Listen to your partner. Listen to your child/children. Listen to all the advice from other parents and professionals. It helps being more informed than winging it. Not everything will suit you or your child, but the more information you have, the better decisions you can make. And always ask for help.

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

The main milestones. The first steps, first words and then there’s the belly laughs, the cuddles, the unintelligible chats, the really bad jokes, the school certificates that mean so much to them. Enjoy the small things, they’re the best.

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

Without a doubt my wife. She has been the rock that has held this family together. She has researched every possible avenue of treatment and support (both financial and mental) to make this journey less stressful, and still pushes to get the most she possibly can to help not only our son with the disability, but our other two kids as well. All of our son’s support workers and everyone at his school are also very integral in the whole process. Also, without our 3-months-bookings-in-advance calendar I’d be lost!

Looking SMIK!

From the backyard to the beach and across paddocks on the farm, Beau Hodder is not limited by his disability thanks to the care and commitment of his family.

Those qualities are also at the forefront of the business that has ensured Beau gets where he wants to go in a safe and secure manner.

The Hunter Valley seven-year-old has cerebral palsy and is reliant on a wheelchair. But far from constrained by it, Beau is benefiting from his custom-made Dejay SMIK wheelchair.

For 35 years, Dejay Medical has been specialising in assistive technology for children and adults, with a range of wheelchairs - all handmade in the business’ Sydney workshop - as well as walking and standing solutions, paediatric seating and tricycles, including its renowned frame running bikes.

Beau’s family was first introduced to the team at Dejay when Beau turned three and had outgrown his special needs stroller.

Mum, Emma, says the experience of working with Dejay to enhance Beau’s lifestyle has been faultless.

“Getting a wheelchair can be overwhelming for a family, but for us it just opened up the activities we could do and helped Beau’s world become more accessible, as we couldn’t continue to carry him everywhere,” Emma explains.

“We trialed lots of wheelchairs but

decided on the SMIK Buzz because it was compact and we could easily lift it in and out of our car. It also folded up and collapsed, which was a bonus for us when we were going away and needed to pack the car to the brim.

“We were also lucky enough to get Dejay to build us a custom third wheel which made the Buzz even more accessible. It lifted the front castors off the ground and made it possible for us to take to the farms where my husband Jarrod and I both grew up, to visit family.

“The Buzz also gave Beau the chance to have an opportunity to learn to self propel – which he never mastered but we wanted to try.”

Steve from Dejay remembers first meeting Beau, when the family lived in the ACT and wanted a chair to utilise the trails around their home.

"The SMIK wheelchair was developed back when there were limited solutions available for families,” Steve says.

“Each chair is custom-made to suit the needs of each family. They are robust to handle the rigours of young children who can be hard on their equipment.

“A free trial at home helped us to design and build a solution to meet Beau’s needs.”

Beau has now grown into a SMIK Joey which has pneumatic wheels and off-road tyres, allowing the family - including sister Tilly and dog Ted - to explore the coast close to their home.

Beau is unstoppable in his new wheels, exploring the farm, trails and even the coast.

“Beau loves the beach and is a bit of a dare devil. He loves his dad taking him into the big waves,” Emma says.

Seeing the happy faces of customers like Beau living life to the full is what inspires the Dejay team at Dejay offices in Sydney, Melbourne and Brisbane.

“We have had long relationships with many of our clients,” Steve explains.

“We have watched them grow up and explore the world and share their memories with us. We do what we do because we love what we do.”

It’s apparent that Dejay’s passion and professionalism is respected by their clients, with the Hodder family impressed by their efficient service.

“We love working with Dejay. They make the SMIK’s in their warehouse in Sydney which reduces the wait time for Beau to get new equipment,” Emma says.

“This was a big factor for us given the current wait times for other equipment since the pandemic.

“We love our SMIK and would definitely recommend the chair.

“We have found Dejay amazing to work with. Beau’s first chair lasted the whole three years he had it – it was hardy and never broke or needed anything replaced on it. It lasted so well we actually donated it to a little person who needed it after Beau via Ben, our rep from Dejay.”

For more infomation see dejay.com.au or contact 0425 255 545 or email therapy@dejay.com.au

By Rachel Williams

‘I had no idea about how something that seems so awful happening to you and your family can ultimately not only make you, but make everyone around you, and exponentially improve you as a person.’

Ian Rogerson

‘You tend to look at people and their behaviours less critically [post-diagnosis] and you’re far, far more accepting because you don’t know what’s going on in their lives and what’s going on in their heads.’

Chris Doherty

‘Find other parents to talk to because people who’ve walked the path you’re now stepping on to are the best people to build a relationship and understand what that journey might be.’

Michael Whelan

‘And I can only recommend it because it’s the best thing that’s happened to my family. We’re un-embarrassable. We’re better people.’

Greg Rafferty

Inside the minds of dads of autistic children…

‘It’s completely okay to show moments of weakness, it’s completely okay to have a bad day. It’s completely okay to say ‘I just can’t today.’ But I think if you stick with it, if you show the love, show the support, you’ll get the benefits.’

Alex James-Elliott

‘Don’t fear the diagnosis, because it’s something that actually crystallises things and helps you understand it.’

Brian Owler

‘I didn’t think it was the end of the world, I just thought we’ve got some stuff we’ve got to deal with here.’

Mat Rogers

‘Never lose hope, just keep working hard and you’ll definitely make a difference in your child’s future.’

Raj Shashi

These quotes are taken from DAD – a documentary created by Autism Awareness Australia to provide guidance, information, and support to fathers with children on the autism spectrum. The film shares the stories of twelve Aussie fathers as they discover a whole new world of parenting and what it means to be a dad. autismawareness.com.au

‘Yeah he’s a little quirky but I don’t care … most of the time people just go … you’ve got tall kids.’ - Richard Peak

Welcome to a World of Wonder!

The Wonderseat family consists of a range of wheelchair seating systems designed specifically for children, providing them with the ultimate support to take on the day!

Learn more at wonderseat.com

Meet Bounce

For children who require a moderate level of support when sitting.

Meet Space

For children who require a moderate to high level of support when sitting.

Our

Among these remarkable achievements were 15 gold medals, 21 silver medals, and 23 bronze medals.

SPECIAL OLYMPICS REVIEW:

TEAM AUSTRALIA BRINGS IT HOME!

The Special Olympics World Games is the world’s largest inclusive sporting event.

In June of this year, 64 exceptional Australian athletes proudly represented Team Australia in a remarkable showdown against 7000 inspiring competitors from across the globe, all of whom had intellectual disabilities or autism. Throughout the nine-day event, these athletes showcased their extraordinary skills, unwavering determination, and exemplary sportsmanship.

The grand stage for this incredible display of talent and spirit was the 2023 Special Olympics World Games held in Berlin. Team Australia’s performance was nothing short of awe-inspiring as they concluded the games with an impressive haul of 59 medals. Among these remarkable achievements were 15 gold medals, 21 silver medals, and 23 bronze medals.

Of the 26 sporting events held throughout the Special Olympics, Team Australia competed in nine including - athletics, basketball, bocce, bowling, equestrian, golf, gymnastic, swimming, tennis.

Gold Medallist, Chris Bunton

Team Australia 2023

Pierre Comis, CEO of Special Olympics Australia spoke about Team Australia’s performance at the Special Olympics World Games in Berlin saying, “It has been truly remarkable to witness our team’s achievements over the past nine days. The years of preparation for our athletes paid off and I can’t wait for them to return home and celebrate their victories with their families, friends and local Special Olympics club members.”

The Special Olympics World Games is the world’s largest inclusive sporting event, and while the 2023 event has now concluded, athletes around the world will soon begin to prepare for the next that is set to take place in four years in 2027.

It all began...

“Sport provides a fantastic opportunity for individuals living with intellectual disability or autism to feel a sense of personal achievement, pride, and inclusion. This was clear at the Special Olympics World Games in Berlin where we had the privilege of competing in many sports with over 7000 athletes with intellectual disability from over 190 nations, and we look forward to seeing many more aspiring athletes strive to be a part of Team Australia in 2027,” added Pierre.

Elizabeth, 22 ATHLETE

Can you please tell us a bit more about yourself –sports you play, what age you first started?

Swimming – I learnt to swim from age of 2 and I’ve always loved playing in the pool at home. I started swimming training with Wendy at Guardian Angels at age 11. I also love gymnasticsstarted at PCYC doing a class around the age of 8. Now doing 3 classes a week at SPC and still loving it!

What else do you like to do apart from all your sport! I love attending the Latch On Program through DSQ and catching up with my friends and learning new things.

We hear you won big at the Special Olympics! Congratulations, what sport did you compete in? I competed for Australia in Gymnastics at the World Special Olympics Games in Berlin in June. I love competing and meeting some new people. I did vault, floor, bars and beam.

The Special Olympics began in Australia in 1976 when many people with an intellectual disability were shut in institutions. It is hard to imagine and while this is no longer the norm in Australia, Special Olympics continue to seek public support to ensure that people with an intellectual disability are not shut out.

By helping Special Olympics give opportunities to play sport, together we can open the door to personal achievement, pride and inclusion for some of the marginalised and isolated members of our community.

For more information on Team Australia, visit: specialolympics.com.au

What advice do you have for other kids/teens that may like to have a goal of playing sport and reaching the Special Olympics one day? Do it! Sport is great it keeps you fit and healthy and you meet lots of people. If you love your sport the training won’t be that hard. I train for swimming 6 sessions a week and I do 5 hours of gymnastics a week, as well as 1 hour with my personal trainer, Kody.

Equestrian Gold Medallist, Isabella Parisi.

The Ten Pin Bowling Team winning Bronze Medal Medallist, Elizabeth Hocart

DEVELOPING LIFE SKILLS

Many people with disability (and their carers) get overwhelmed when they think of the prospect of change. But it doesn’t have to be one “big” thing. In fact, better results are often achieved when people take it one step at a time.

Check out this helpful guide from Endeavour Foundation.

HEALTH

A great place to start is with health. Living a healthy lifestyle is an integral part of quality of life. Common skills include healthy eating, exercise, personal hygiene, and safe sex.

Let’s take a closer look at the key areas of healthy living:

Personal hygiene

Personal appearance and hygiene can often help boost confidence in social situations. In fact, looking and smelling good will help nurture a sense of personal pride.

The key to maintaining a healthy personal hygiene level is all about daily habits.

Daily habits such as showering, brushing teeth, using deodorant and perfume/aftershave, getting dressed and combing hair, may seem simple, but can significantly improve personal hygiene and confidence.

A great way to support changes is by modelling the behaviours. Consider involving yourself in these daily habits with your loved one.

Eating and cooking healthy food

A GUIDE TO in young adults with disability 36 SOURCEKIDS.COM.AU

A healthy diet has many obvious, and several not-so-obvious, benefits. Eating healthy foods helps people maintain a healthy weight. This may prevent the increased risk of illness or disease later in life.

Psychologically, healthy eating can make an individual feel more confident in the way they look and interact with people.

A good way to kick-start a healthy diet and eating routine is to take a cooking class. This will help your loved one start to understand what foods can go together to make for a tasty meal. Plus, new cooking skills may even inspire them to take it up as a hobby.

Exercise

Everyone has a different level of ability when it comes to exercise. Daily exercise can start with something as simple as a walk to the shops, or a few arm raises.

Small habits such as this can boost energy levels and over time will improve body image, strength and well-being.

To make sure your loved one has the most appropriate exercise program for their ability, contact an occupational therapist or support worker who can help you put together a plan.

Sexual health

Sexuality is a normal part of life. We’re all human, and experience feelings and desires that drive us toward sexual activity.

Sexual activity comes with responsibility. Which means learning to treat others with respect, and understanding good sexual health practices.

People with disability can have rewarding

process, but you’re not sure where to start.

SHOPPING

Shopping is a great way to interact in the community, improve communication and social skills. As well as learning important life skills such as money handling. Consider combining a trip to the shops with a bit of exercise. By choosing to walk to the train station or local store with your loved one.

sexual relationships. But to do so, they may need more support and information.

Sexual health for people with disability is a large topic. There are some basic principles that can provide an appropriate starting point:

• Help them understand and believe that they can have a fulfilling sex life.

• Appreciate that a disability can at times hinder sexual activity, especially if it is physical.

• Encourage them to seek information about what is appropriate, and what isn’t when it comes to sexual activity from a social and legal perspective. Educate your loved one on the potential implications of sexual activity. Such as

pregnancy, Sexually Transmitted Diseases (STDs), consent and emotional trauma.

HOUSEHOLD ACTIVITIES

Washing, ironing, cleaning or gardening may be the type of life skills your loved one can start to build around the house.

Much like other skills mentioned, the real benefit they will get from working on these skills is the confidence that they can learn new things.

HOBBIES AND SPORT

Sport can be a great way to develop friends, communication skills and stay fit and healthy.

But if it’s not for them, no worries. There

are plenty of hobbies they can take up that don’t involve throwing a ball around or using a bat.

Hobbies are a huge part of a fulfilled lifestyle and something any adult should partake in. Maybe they love fishing, maybe they love playing board games, or maybe they just love spending time at the beach. Think about what they are passionate about and encourage them to do more of it.

COMMUNITY

Many of us like to spend time in our local communities. The more someone interacts and engages with the local community the easier it becomes.

Here are a few skills you can help your loved one focus on to become more involved in the local community:

Public transport

Some people are not enthused about public transport, but it’s a great opportunity to interact with people and boost someone’s skill set.

Instead of taking a car/taxi ride, encourage them to jump on a train or a bus. They may need some support or feel uncomfortable initially, so go along with them to share the experience.

Once they are familiar with the transport system it will free them up to do more of the things they love, without the required help of anyone else.

Road safety

With increased independence comes a greater need for awareness. If someone doesn’t have a driver’s license or is unfamiliar navigating the streets alone, there could be a big knowledge gap.

People with disability often rely on their carers to help them better understand these situations. The goal is to help them reach a competency level at which they can interact in everyday situations more independently.

Consider encouraging your loved one to do a road safety course, and then go along with them. Practice the lessons you learn next time you go out together.

The skill of making friends comes down to respecting others’ feelings, finding common interests and maintaining contact when they are not around. You can break these things down into little objectives or daily habits for your loved one.

For example, they may get into the habit of calling a friend every Sunday at 5pm. This small gesture will quickly turn into a habit, and often a habit that improves their quality of life.

EMPLOYMENT

Eating at restaurants

Eating out at restaurants can be a lot of fun, but for some people with disability it can be a daunting experience. The thought of needing to communicate with the wait staff, explain their order and then pay the bill requires many crucial life skills. Combine these things and this can pose an anxiety provoking scenario.

Repetition is the key to building any skill. The more you go out for dinner with your loved one, the more comfortable they will be with the situation.

RELATIONSHIPS

Relationships come in all shapes and forms - from friends, family, support workers, carers and intimate partners –the skills required to develop meaningful relationships are diverse and challenging.

But without developing the skills to nurture and sustain these relationships, life can be lonely. So, taking the time to invest in the life skills required to build meaningful relationships is a worthwhile pursuit.

There are three key areas of development you may like to look at:

1. Social interactions

Relationships all begin with social interactions and there are some basic skills you can help your loved one develop.

Meeting someone for the first time is often just as intimidating for them as it is for you. Encourage your loved one to start strong by introducing themselves with a firm handshake or welcome.

Help your loved one understand the concept of personal space and what’s acceptable, or not acceptable in a social situation.

Teach and practice common courtesy such as opening the door for someone else, giving up your seat on the bus, or waiting in line for a movie ticket behind others.

2. Communication

Once the first impression is out of the way in a social situation, the relationship moves onto communication – both verbally and physically.

Perhaps the hardest communication skill to develop is in appreciating how much body language contributes to the meaning of a conversation.

Learning the skills associated with effective communication can be a lifetime journey for any adult, so be patient and celebrate small wins with your loved one if they seem to be making progress.

3. Making friends

As your loved one becomes more attuned to social interactions and communicating with others, they are likely to develop friendships.

Work is a part of adult life. It empowers us to contribute to society and make money to do more of the things we love – whether they be hobbies, sports or community activities.

As the largest employer of people with disability in Australia, Endeavour works to find employment opportunities for people with disability that focus on their strengths and capabilities, and will help each individual develop as a person to fulfill their potential

Supported employment will help develop life skills. Such as:

• Preparing a resume

• Conducting an interview

• Handling money

• Budgeting

• Workplace interaction

• Health and safety practices

• Teamwork

• Customer service

Developing life skills in people with disability isn’t just about a more independent lifestyle, it’s also about having fun and enjoying the day-to-day social opportunities that come along.

Staying healthy, taking up new hobbies, getting involved in the community, building relationships and starting to work – these things contribute to a meaningful lifestyle for any adult.

Endeavour Foundation is dedicated to informing and supporting carers and people with disability through these pivotal life moments. To find out how they can help, visit endeavour.com.au or call 1800 112 112.

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& SCHOOL CAMPS Excursions

REASONABLE ADJUSTMENTS

A range of reasonable adjustments can be made to support your child. Examples include:

• Providing a social story

• Providing a detailed visual schedule

• Having a bus buddy and a dedicated seat on the bus

• Activities for the bus

• Being in a cabin with a small group

• Being in a cabin close to teachers

• Accessible activities – it’s important to cover this in detail. Camps often focus on highly physical activities and significant changes may be needed so your child can participate

• Being in a group with an Education Support Officer for activities

• Having options for quiet time or a structured activity during breaks

• Access to their device during break time

• Taking their own food

• Having a go-to person for any difficulties

WHAT YOU CAN DO

• Prepare your child before the event and talk about what to expect. You know best how much preparation your child will need or whether this will build anxiety

PLANNING IS THE KEY TO SUCCESS

Start the conversation early with the school about upcoming excursions or camps. Talk to your child’s teacher about what will be involved and share information on what may need to be considered.

Ask allied health therapists who work with your child, to recommend supports and reasonable adjustments that could be implemented.

A Student Support Group meeting (or the equivalent in your state) is a good place to develop a plan of support for your child. Take into consideration any health, sensory or behavioural needs your child may have. Ensure you mention everything – nothing is too trivial and can help build a picture for support.

Checklist of things to mention:

• Medication and medical needs

• Personal care needs (e.g. does your child need help with teeth cleaning, tying shoes, etc.)

• Toileting (e.g. night-time pull-ups, prompting, constipation, bed wetting, Conni sheets, etc.)

• Travel sickness (e.g. what helps)

• Foods (e.g. what they do and don’t eat)

• Bedtime routines (e.g. time, calming routines, etc.)

• Fears or phobias (e.g. spiders, darkness, heights, etc.)

• Have a countdown on the family calendar

• Go through the list of things they need to take

• Google the destination and show your child where they will be going

• Check out the websites of the activities or places they will be visiting

• Some families visit the camp beforehand

• Some families offer to volunteer at the camp or offer to stay nearby. You might want to do this if you think it will help your child. But schools cannot require you to do this.

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

Excursions and camps are an important part of the school curriculum, and every child has the right to attend. Schools have an obligation to make reasonable adjustments for the inclusion of students with disability.

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Ways your OT can help you

MAINTAIN BALANCE AT HOME

There are many ways that we can explain the role of an occupational therapist. As defined by Occupational Therapy Australia “occupational therapists use a whole person perspective to work with individuals, groups and communities to achieve optimal health and wellbeing through participation in the occupations of life”. Defining the role of an occupational therapist can sometimes be challenging and confusing, therefore I want to focus the remainder of this piece on the ‘whole person perspective’ and what this means for occupational therapists working with children and families.

The importance of the ‘whole person perspective’ connects to what we call conceptual models in occupational therapy. These models help guide an occupational therapist’s thinking processes and decision making, they support the complex process to consider a child’s values, motivation, ability to complete daily activities and routines, and importantly their family network.

The ‘whole person perspective’ encompasses a significant consideration for mental health, extending its focus beyond the individual child and encompassing the well-being of the entire family unit. To better grasp this concept, let’s envision your family as an intricately interconnected system of cogs, each fitting together flawlessly and spinning harmoniously in unison. As a parent or primary caregiver, you are the central cog—when you encounter obstacles or become immobile,

the entire system comes to a halt. Similarly, when one of your children faces challenges that impede the smooth rotation of their cog, it disrupts the flow of your family, impacting usual routines and dynamics.

We are all aware that the last few years has taken a toll on us in many different ways. Life, however, has not slowed down, demands are increasing, cost of living is growing, there never seems to be enough time in the day! Thinking about everyone in your family finding ways to ensure the cogs are running as smoothly as possible is important.

So, what can you do to help the cogs continue to flow smoothly? The below are thoughts to consider and questions you can ask your child’s occupational therapist.

PLANNING

Clear plans provide children with structure and expectation. It helps children feel prepared and in control of what to expect for their day.

Ideas to explore with your occupational therapist:

• Would my child benefit from visual supports

• What can we do to help our child when plans have to change

ORGANISATION

Organisation involves more than just assigning specific places for items; it also pertains to the way we structure and complete each step of a task. Seek support from your occupational therapist to develop

strategies such as:

• How can I support my child to learn to follow more than one instruction

• What else can we do to arrange or organise our home to help our daily routines

EMOTIONAL REGULATION

Large emotions can often be a form of communication for children that do not know how to respond with words. Children need to learn and rely on your support to regulate their emotions while they learn strategies to do this on their own.

Seek support from your occupational therapist to:

• Help develop emotion and feelings resources and ways you can implement these at home

• Explore your child’s sensory system and what regulation activities can be in their ‘tool kit’ to help build self-regulation strategies

GRATITUDE

Cultivating gratitude involves expressing appreciation and kindness. Integrating activities centred around gratitude into your daily routine can help your family develop strength and resilience. Don’t hesitate to ask your occupational therapist for ageappropriate ideas that you can implement at home.

By Amy Oman (Whitten). Founder - Senior Occupational Therapist, explorelearnmove.com.au

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LET’S ALL PLAY!

LET’S ALL PLAY!

Spring is the perfect season to get outside to enjoy the fresh air, and what better place to have some fun and shake off the winter blues than an inclusive, all abilities playground. The great thing about all abilities play spaces is they are designed for children with a variety of disabilities, sensory issues and more, so everyone can enjoy playtime together.

ACCESSIBLE PLAYGROUNDS

Atruly inclusive playground will offer a range of features including access, equipment design, ground cover, fencing, shelter and accessible toilets. We’re happy to report that the number of accessible and inclusive playgrounds around Australia is growing all the time; we can’t list them all, but here are a few beauties state by state where our kids can play side by side with their siblings and friends.

ACT

Boundless Playground, Kings Park

Boundless – The Centenary of Canberra National Playground, is located on the shore of Lake Burley Griffin at Kings Park. The playground caters to different levels of ability and was initiated as a project to celebrate Canberra’s centenary. Within the three play zones you’ll find wide, wheelchair friendly paths, an accessible merry-go-round, a wheelchair friendly aero-glide rocker and heaps more accessible equipment. For those hot summer days, there’s also a fabulous water play area that everyone can access.

NSW

Ian Potter Children’s WILD PLAY Garden, Centennial Parklands, Sydney Sensory play is right at the heart of this beautiful, natural and inclusive space. Sensory play opportunities include the use of different terrains, a variety of natural textures, loose natural parts for children to move around, spaces for a variety of physical movement alongside areas for quiet contemplation and/or play providing for a total hands-on experience. Children can spend hours getting lost in the wonder of nature with dry creek beds, an artesian water play area, a bamboo forest, banksia tunnels, turtle mounds and Centennial Park’s first treehouse.

Wawai Ngurra Playspace, Doonside

A new playground that opened earlier this year - people of all ages and abilities can access unique features that include a customised elevated walkway, a Changing Places facility, all access swings, slides, musical items, trampoline, a sand table, quiet places and a play sculpture. The play space provides numerous disability parking spaces – always a bonus!

Oatley Park Adventure Playspace, Oatley

Located alongside the Georges River, the enormous Oatley Park is one of Sydney’s most popular play spaces and a nature lovers dream. As part of the NSW Government’s Everyone Can Play Program over 80 per cent of the playground is accessible for children of all abilities who will love the natural bushland setting and wooden equipment.

Livvi’s Place, Warragamba

A large fully fenced and 100% accessible park featuring selected play equipment to encourage kids to play actively, imaginatively and socially. Here you’ll find sensory items (music, lights, touch and texture), water play, grassy areas, pathways and equipment that can be accessed by prams, wheelchairs and walkers. Parents are also taken care of with shaded picnic tables to kick back and relax, as well as free BBQs to cook up a feast for lunch!

NT

Jingili Water Gardens

Jingili Water Gardens is one of the most popular and accessible parks in Darwin. Containing lily ponds, a community garden, BBQs, accessible toilets, adult change facilities, a shaded all-abilities play space and a skate park - it really does have something for the whole family. The play space features a turn table, swings, balance log, tunnel and musical instruments.

QLD

Pratten Park, Broadbeach

Pratten Park is home to the Gold Coast’s first all abilities playground. At the northern end of the park, there’s a huge hill slide, flying fox, a swing set catering for up to 5 children or a fully harnessed seat for those who need more support. The fully fenced playground provides access for all children to experience fun, interactive and challenging play, while their families and carers watch over them in an enjoyable and relaxing environment. The park also features a Changing Places toilet with an adjustable height change table, ceiling tracking hoist and toilet.

Boundless Playground, Kings Park

Livvi’s Place, Warragamba

Ian Potter Children’s WILD PLAY Garden

Leslie Patrick Park, Arana Hills

With a sensory garden, Braille, accessible carousel, adaptive disability swings, and colourful ‘honey bee’ artwork, The Hills District all abilities playground is perfect for a group BBQ and outdoor play. Opened in December 2019, the All Abilities Playground is located within the Leslie Patrick Park precinct at Arana Hills, just north of Brisbane CBD.

Caboolture Region Environmental Education Centre (CREEC) All abilities playground

The Moreton Bay Region’s first all abilities playground where you will find plenty to see, touch, smell and do. There is a carousel, flying foxes with large platforms, adaptive swings, and wheelchair ramp leading to a ‘pirate ship’ with moveable knobs and cogs.

Dotted around the spacious area are low benches, sandstone block seating, animal statues, musical play equipment, and sensory boards.

Within the wider CREEC there are walking tracks, picnic spots, sensory garden, and a community nursery to enjoy.

SA

Thorndon Park, Paradise

Featuring the historic reservoir and a brand-new all-inclusive play space, Thorndon Park is a major attraction for all ages and abilities. The playground celebrates the diverse and plentiful bird life that Thorndon Park is known for with play zones inspired by flight and nesting, as well as habitat types and food sources. Some of the playground’s accessible features include a liberty swing, vision impaired table tennis table, wheelchair accessible trampolines, raised sand play area, raised water play area, an all-access carousel, Auslan signage, communication boards and accessible pathways.

Hendrie Street Reserve Inclusive Playground, Park Holme

This Livvi’s place was South Australia’s first purpose built inclusive playground and includes a wide range of equipment where consideration has been given to children who may have mobility issues, vision and hearing impairments and spectrum disorders such as autism. As well as a host of accessible equipment, hard

pathways through the playground have been designed wider to allow the easy access and manoeuvrability of mobility chairs and there are fully accessible toilets that include an adult-sized change table.

TAS

Riverbend Park, Lindsay Street, Invermay

This all-abilities park transformed a former industrial precinct into a major recreational area for Launceston. Divided into four zones - The River Play area, Gorge Play area, Wild Core area, and Urban Plaza – there is a range of play equipment and experiences, including swings, diggers, sand pits, a wheelchair carousel, a water play area, musical instruments, and a full-size sports court.

Kingston Park Playground, Kingston

This nature-based playground is one of Tasmania’s most interesting play spaces. There are nine distinct areas of play, representing the aspirations of the community and inspired by native fauna and habitats within Kingborough. Many of the areas are a sensory delight, especially the sand play area, rock pool water play, the spinning zone and a wonderful sensory garden with musical instruments nestled inside.

VIC

Ross Reserve All Abilities Playground, Noble Park, Greater Dandenong

Located between the Noble Park Community Centre and Noble Park Aquatic Centre, Ross Reserve offers an inclusive experience for all, providing a play environment for a diverse range of

Hendrie Street Reserve Inclusive Playground

Leslie Patrick Park, Arana Hills

Caboolture Region Environmental Education Centre

children, youth and adults of all ages, sizes and abilities. There’s a huge array of inclusive equipment in the park including a double flying fox with accessible harness, an inclusive trampoline, accessible ramp with slides, tunnels and basket swings, a liberty swing, accessible spinner and a woodland environment sensory play area.

Victoria Park Inclusive Play Space, Ballarat

With wheelchair friendly air-jumpers and a double flying fox, Ballarat’s Victoria Park Inclusive Play Space is 10,000 fenced square metres of award-winning fun. Additionally, the swings, spinners, water play, and slides allow everyone to enjoy a wide range of play experiences alongside or with others. The playground is designed with many safety features, including fencing with single point entry that helps protect children who may not be aware of road safety.

Nature Play at Royal Park, Parkville

Once voted Australia’s best playground, this unique, accessible, nature-based space features plants and play elements representing the seven Wurundjeri seasons, as a way to encourage discovery and understanding of Indigenous Melbourne. The natural wooden structures and wide paths and open spaces are designed to encourage creative play with stomping, splashing, cubby-building

and rolling downhill all part of the fun to be had here. The location is not far from the Royal Children’s Hospital making it a great pre- or post-appointment stop off.

WA

Pia’s Place, Whitman Park, Perth

Situated within the stunning Whiteman Park, Pia’s Place has inclusive play apparatus and a good amount of disabled parking. Accessible toilets can be found within the main restroom area, while a wheelchair-accessible platform near Pia’s play area allows easy boarding onto the tram.

Bibra Lake Regional Playground, Bibra Lake

This wonderful park features sensory play for the visually impaired and supportive seating on the flying fox, swings and seesaws. The playground also has a Changing Places restroom that includes a tracking hoist, a height adjustable adult sized changing bench, automatic doors and enough space for two carers.

The Adventure Park, Calista

Another destination that features a Changing Places, The Adventure Park has been inspired by the natural beauty of Kwinana, incorporating elements of the beautiful bushland, coastline and wetlands. It has been purpose-built to be inclusive and allow children of all ages and abilities to participate.

Accessible play equipment includes an awesome wheelchair accessible tree maze with options for inclusive play at all levels.

Want to find more accessible places to play near you? Take a look at your local council website, or the fantastic Touched by Olivia – touchedbyolivia.com.au who work tirelessly to expand the number of accessible playgrounds around the country. Playgrounds.com.au is also another useful resource.

Nature Play at Royal Park, Parkville

The Adventure Park, Calista

Bibra Lake Regional Playground, Bibra Lake

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Executive Functioning ALL ABOUT

The following analogy sums up Executive Functioning perfectly! Think about the air traffic controllers at an airport. They safely manage both the arrivals and departures of countless aircrafts on several runways, which in turn is similar to how our brain works when needing to filter out distractions, prioritise tasks, achieve goals and self-regulate when impulses occur. From childhood, we make around 35,000 decisions a day, using different combinations of executive strategies which are needed for the task and/or situation. For each one of those decisions, we require the executive functioning skills to perceive, be aware of the task that needs to be done, then do something to accomplish it, and constantly assess if we are doing it effectively.

THE EIGHT EXECUTIVE FUNCTIONING SKILLS

1. Impulse Control/Inhibit: Not acting on an impulse or stopping one’s inappropriate behaviour at a given time

2. Emotional Control: Modulating and controlling one’s emotional response appropriate to the situation or stressor

3. Flexible Thinking: Allows a child to respond appropriately to an unexpected change of events

4. Working Memory: Holding information in mind to complete a specific and related task

5. Self-Monitoring: The skill involved in evaluating one’s work

6. Planning and Sequencing: Anticipating future events, setting goals, and developing the appropriate steps ahead of time to carry out the activity

7. Task Initiation: Allows us to act and get started on tasks

8. Organisation: Allows your child to keep on track of effectively and efficiently achieving the desired outcome

Executive functions are known as a set of higher cognitive processes essential for the cognitive control of various behaviours. It is the mental process that enables us to plan, focus, organise and complete multiple tasks successfully at once.

Executive Functioning Milestones

Different from other milestones, executive functioning skills don’t have a concrete developmental scale as they vary for individuals of all ages. However, most executive functions seem to reach a plateau of maturity at about 12 years of age. After that, the skills already developed become more sophisticated with time.

See the table right with an approximate age development of executive functions skills:

QUICK TIPS TO SUPPORT EXECUTIVE FUNCTIONING IN CHILDREN

If you want to kick start your child’s executive functioning journey at home, here’s a list of strategies to assist you in the process: Establish routines to consolidate skills and memory of what needs to be done.

Improve the working environment by decluttering their workplace and limiting distractions.

Use calendars to keep track of specific dates and events, e.g., chores, activities, assignments.

1-2 years 6-12 months 3-6 years

SKILLS

• Attend to things for longer amounts of time (still minimum)

• Behaviour is reflexive (not flexible)

SKILLS

• Inhibits some reflexive behaviour inconsistently

• Shifts attention to new things in environment

7-9 years 10-12 years

SKILLS

• Performs selftalk (talking to themselves to work through a task)

• Processes new information faster and more accurately

• Resists more distractions

• Develop goals

• Learn from mistakes and creates alternatives

• Switches between tasks

SKILLS

• Increases impulse control, attention and concentration for longer periods of time

• Switches between multiple tasks

• Learns from mistakes and creates alternatives more often

• Plan and organises tasks more effectively

Create a family “to do” list.

Make a visual schedule for specific routines of the day, e.g. morning routine, afternoon and night.

Use aides, such as timers and alarms to keep track of time.

Incorporate a multisensory approach to learning and following instructions – this could be written, visual or oral.

SKILLS

• Increases impulse control, attention and concentration

• Resists some distractions

• Follows 2-4 step tasks

• Demonstrates knowledge of rules

teens

SKILLS

• Increases working memory capacity

• Increases cognitive flexibility

• Able to plan and organise more complex tasks

• Demonstrates better decision making and goal selection skills

OBSERVING EXECUTIVE FUNCTIONING DIFFICULTIES IN CHILDREN

Considering the above milestones, there are some common observations which may indicate that a child is experiencing executive functioning difficulties. For preschool aged children, this can include giving up when things go wrong, forgetting what comes next or looking ‘frozen’ and unable to initiate the next task. For primary school aged children, this could be having trouble shifting between two activities, trouble getting organised, rigid thinking of seeming to miss the point. For high school aged children, this could look like difficulties making social plans, procrastinating, overreacting or being surprised by failure.

By Lisa Hughes, Occupational Therapy Helping Children.

Lisa Hughes is director of Occupational Therapy Helping Children, a team of OTs in Sydney’s Frenchs Forrest dedicated to helping children thrive; offering one-on-one supports, as well as parent workshops and teacher training sessions. occupationaltherapy.com.au

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Madie Fidgets

Win one of these amazing 3D printed articulated fidgets by Madie Fidgets! This baby fidget animal pack is fun for any age. RRP $25 madiefidgets.com.au

These light up drawing boards will capture the imagination and creativity of anyone who uses them. They are a fun way to encourage even the most reluctant of writers to pick up a pen and have a go! Made with a special material that glows when it comes into contact with UV light. No batteries or cords required! RRP $39.95 mydiffability.com.au

TalkiPlay Wooden Rainbow

The TalkiPlay Wooden Rainbow set is a beautiful addition to the TalkiPlayer speaker to help develop your child’s communication. It also comes with ‘smart stickers’ attached to each coloured arch to help develop your child’s learning. RRP $49 mydiffability.com.au

Meditate with Friends

Meditate with Friends helps with sleep and starting the mindfulness journey for young people. Helping young people to experience the enjoyment and benefits of quiet time and meditating. One subscription is up for grabs! RRP $99 meditatewithfriends.com.au

The Works Fidget Kit

from Kaiko covers a full range of sensory preferences, so there’s something to suit everyone! Includes 7 different metal fidgets that are discreet, quiet and suitable for those that want ageappropriate fidgets. RRP $122.65 kaikofidgets.com

USE SCREEN TIME TO GET MOVING! TO GET MOVING!

Movement games on gaming systems and iPad apps are revolutionising how children can engage with technology while staying active. Motion sensors, cameras and touchscreens all come in to play, helping our kids to dance, play sports, or even go on adventures from the safety and comfort of their own living room. By seamlessly blending entertainment and exercise, these games can help with therapy and exercise, promoting coordination, balance, and motor skills development all while offering an innovative solution to the ever-present screen-time dilemma! Here are a few of our favourites.

COSMIC KIDS

Billed as ‘Screentime that gives kids Superpowers’, Cosmic Kids Yoga is a fantastic program designed to make yoga and mindfulness engaging and fun for kids. The program uses stories, themes, and animated adventures to guide children through yoga poses and relaxation exercises. The app and YouTube channel includes hundreds of videos and stories to inspire movement, self-awareness and FUN. cosmickids.com

GO NOODLE

GoNoodle is an online platform that provides interactive videos and activities designed to get kids moving, active, and engaged. It’s a popular tool used by educators, parents, and caregivers to incorporate short physical activity breaks and mindfulness moments into children’s routines, whether at home or at school.

GoNoodle offers a wide range of videos featuring dance-alongs, exercise routines, yoga sessions, and even calming mindfulness exercises. gonoodle.com

LUSIOMATE

Awarded the most innovative product award at the recent Source Kids Expo, LusioMATE is a fun way for kids to reach their goals – for example, putting on a piece of clothing, better skids on their bike, or to stand up unaided.

LusioMATE is a gaming therapy app that connects to wearable sensors which fit almost anywhere on the body, offering amazing flexibility, to suit your child’s goals. It also gives you access to a constantly expanding library of FUN ‘exergames’, where your therapist can set your child a program and track progress. Get more info here - lusiorehab.com

JUST DANCE NOW

We love the hugely popular Just Dance video game series as a way to get kids moving and grooving and the Just Dance Now app allows you to enjoy Just Dance’s greatest songs and moves on the go! Dance to a free song every day! Get ready to dance to over 700+ top global hits from around the world, including the best tunes from the Just Dance 2022 console game! Who’s going to be Beyonce!? apps.apple.com

THE ADVENTURES OF SUPER STRETCH

Move, play and breathe as Super Stretch introduces you to his friends and their yoga poses. Super Stretch is your guide who takes you on your journey. Using storytelling, animation and video examples, kids enjoy making NAMASTE a part of their day. adventuresofsuperstretch.com

BEAT SABER

Beat Saber is a popular virtual reality rhythm game that combines music, lightsabers, and fast-paced action. It’s played on virtual reality headsets, like the Oculus Rift, Oculus Quest, PlayStation VR, and others. In Beat Saber, players use virtual lightsabers to slice through blocks that come flying towards them in sync with the beat of the music. Amazing for handeye co-ordination! beatsaber.com

RING FIT ADVENTURE

This truly is an adventure that keeps you moving. With the Ring-Con in hand and Leg-Strap equipped, it’s time to set out on a fitness-filled quest! This Nintendo Switch fitness game encourages users to explore a fantasy adventure world to defeat a bodybuilding dragon and his minions using real-life exercises. Jog in place to traverse grass-swept plains, do overhead shoulder presses to attack enemies, and strike some yoga poses to refill your health metre. nintendo. com.au/games/nintendo-switch/ ring-fit-adventure

JUMP JUMP FROGGY 2

Get a jump start on physical fitness and fundamental mathematical concepts while exercising body and mind with Flip the Frog and his colourful friends. Your physical motion in the real world controls the action simply hold your device in your hands and jump! The higher you jump, the higher the frog jumps!

jumpjumpfroggy.com

SWITCH SPORTS

Another great movement game from Nintendo - you can swing, kick and spike your way to victory in Nintendo Switch Sports.

Grab a Joy-Con controller and use realworld movements to take part in a variety of sporting activities that’ll get your body moving. Gather friends and family to join in the fun on the same Nintendo Switch console or seek out new competitors to challenge in the online multiplayer. nintendo.com.au/games/nintendoswitch/nintendo-switch-sports

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SYDNEY 16-17 March 2024

MELBOURNE 5-6 July 2024

BRISBANE 3-4 August 2024

PERTH 26-27 October 2024

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Everyone deserves the chance to ride a bike

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Setting up your child for SUCCESS in semester two SUCCESS

Helping your child make it through the whole school year

The second half of the school year can present its own unique set of challenges, especially for parents of children with learning difficulties and/or disabilities. The novelty and excitement of a new year, new classes and new things to learn has well and truly worn off by semester two and fatigue, boredom, motivation dips and other behavioural issues can all rise to the fore.

You would hope that your child’s school would be well equipped to deal with fluctuating engagement levels throughout the year and adjust strategies as needed, but if you’re looking at things you can assist with, we’re here to help with some ideas. In this article, we’ll look for some of the potential reasons behind a child’s decline in motivation and provide practical tips to help you nurture and sustain your child’s engagement throughout the entire school year.

UNDERSTAND THE FACTORS (AND DON’T DISCOUNT THE PHYSICAL ONES!)

Motivational decline can stem from various factors such as fatigue, academic pressure, or a sense of monotony. Talk to your child’s teachers to understand the specific challenges they may be facing and identify any underlying causes. For many children with disability, while mental fatigue is a real thing, physical tiredness can significantly impact a child’s motivation and engagement in school. As the school year progresses, the accumulation of academic and extracurricular demands, coupled with potential sleep disruptions, can leave children feeling exhausted. You can work on diet, sleep and rest at home

but also talk to the school about whether your child needs a modified timetable, scheduled breaks or other accommodations to enable them to recharge.

SET MEANINGFUL GOALS

If their development level is appropriate, you can work with your child and school to set meaningful and achievable goals for the remainder of the school year. These goals should be specific, measurable, and relevant to their interests and aspirations. Break larger goals into smaller milestones to provide a sense of progress and accomplishment along the way. Regularly revisit and celebrate achievements to maintain their motivation.

RE-ESTABLISH STRONG COMMUNICATION CHANNELS

Effective communication between parents, teachers, and support staff is vital for your child’s success. We know that parents and schools are run off their feet most days –and it’s easy to let communication slide and only pop our head above the parapet when things go wrong – but regularly scheduled meetings and email exchanges can help maintain a strong partnership and ensure everyone is working towards the same goals. You can also work with teachers to explore additional resources or strategies that can support your child’s motivation and engagement. Working together as a team will help create a consistent and cohesive learning experience for your child.

REVISIT THE IEP

If your child has an Individualised Education Plan (IEP) or a similar document, you should take a look and ensure it reflects your child’s current needs and goals. Discuss any necessary modifications or accommodations with the school team based on any issues that may have arisen in the first two terms of the year.

ENCOURAGE SELF-ADVOCACY SKILLS

Empower your child to become their own advocate by teaching them self-advocacy skills. Help them understand their learning difficulties or disabilities, build their self-confidence, and encourage them to communicate their needs effectively to teachers and peers. When children can express their challenges and advocate for themselves, they become active participants in their education.

SUPPORT EMOTIONAL WELL-BEING

Students with learning difficulties or disabilities may face emotional challenges related to academic pressures or social interactions. Be attentive to any signs of stress or anxiety in your child and foster a supportive environment at home. Encourage them to express their feelings and provide strategies for managing stress, anxiety, feelings of rejection and ways to build resilience. Consider relaxation techniques, engaging in hobbies, or seeking support from school counsellors or therapists.

CELEBRATE PROGRESS AND EFFORT

Acknowledge and celebrate your child’s progress and efforts, regardless of the outcome. Recognise their hard work, perseverance, and improvements in specific areas. Praising their efforts and highlighting their strengths will help build their self-confidence and foster a positive attitude towards learning.

MAKE LEARNING REAL

Some students find it hard to ‘see the point’ of learning. Try to connect academic subjects to real-life situations and practical applications. Show your child how what they’re learning in school relates to their everyday experiences, future goals, or areas of interest.

SEEK ADDITIONAL SUPPORT

If your child requires additional support beyond the resources available at school, explore external services or professionals specialising in learning difficulties and disabilities. Consider seeking guidance from specialists, tutors, or therapists who can offer tailored strategies and interventions to address your child’s unique needs.

TIME OUT (FOR EVERYONE!)

We’re not advocating continual nonattendance here, but there’s a lot to be said for mental health days. The occasional day spent doing something together in the fresh air or something your child loves at home instead of being at school and in the office can work wonders for resetting emotions and engagement.

Sustaining motivation throughout the latter half of the school year for our unique kids requires a thoughtful and proactive approach by both schools and parents. By reassessing goals, fostering effective communication, and promoting self-advocacy skills, you empower your child to overcome challenges and thrive in their educational journey. Your support, encouragement, and belief in their abilities are instrumental in helping them navigate the challenges and achieve their full potential.

Executive FUNCTION

NOISE-CANCELLING HEADPHONES FOR KIDS

Noise-cancelling headphones designed for children can help minimise distractions to aid their concentration and sensory enjoyment. Can be used from babies through to teens.

VISUAL SCHEDULES

Utilise downloadable visual schedules and apps like First – Then to help children follow routines, transition between activities, and

BIG FEELINGS PINEAPPLE - BUILDING SOCIAL AND EMOTIONAL SKILLS

The Big Feelings Pineapple has 26 different pieces to build expressions to help children learn about how emotions and facial expressions show what people are feeling. Gives children the opportunity to identify and talk about expressions and also to recognise their own. RRP $27.95 skillbuilders.com.au

Ems Earmuffs, $29.99 earmuffsforkids.com.au

First Then Visual Schedule App, $9.99 (tech) apps.apple.com

CHORE CHARTS

Chore charts help kids organise their tasks, track their progress, and develop responsibility. This fully magnetised, interactive daily routine chart will provide kids with visual reminders that encourage co-operation, establish family responsibilities and contribute to the family unit. RRP $25 sistersensory.com.au

William Ready Ear Pro’s, $54.95 williamready.com.au

From $8.33 (low tech) twinkl.com.au

CAN YOU SOLVE ME?

These brain teasers are designed to test logic and spatial reasoning skills. With 12 puzzles in the set, the Can You Solve Me puzzle is great for spatial awareness, handeye coordination, and problem solving. 3 levels; easy, intermediate and hard. RRP $69.95 kaikofidgets.com.au

When it comes to helping children develop their executive functioning skills, there are some great products out there – here are a few of our favourites!

STRATEGY GAMES

Strategy games are a fantastic way to improve executive functioning in a fun way! Jump In, uses rabbits, mushrooms and even the moving foxes to jump around and hide the rabbits in their holes. A great travel game that features 60 challenges and a portable carrying case. RRP $24.99 edresources.com.au

For shorter tasks

TIME TIMER PLUS 20 MINUTE

A new version of a popular favourite, the Time Timer PLUS 20 Minute timer offers a greater visual impact for shorter tasks like completing blocks of homework, chores, reading and more. It helps children better understand and manage their time during activities. RRP $54.95 mydiffability.com.au

MINDFULNESS APP

THE BILBY - ENHANCING LEARNING BY CREATING A SAFE PLACE

MyBurrow was developed to aid children and adults struggling because of issues with self-regulation, anxiety and sensory stimulation. It is useful for people with social or communication issues, delayed motor skills or trouble with concentration and attention. Also used by occupational therapists, physiotherapists and teachers to help children stay calm and address MULTIPLE goals in one session. The Bilby $227 myburrow.com.au

FLYFECTA – A GAME FOR QUICK THINKING

In this exciting game, players use ramps to launch their discs into the slots on the gameboard. The goal is to get three in a row, but be careful, other players can stack their discs on top of yours to win! Encourages spatial reasoning, concentration, quick thinking. RRP $32.95 skillbuilders.com.au

FUN AND FOCUS PACK TO HELP BUILD CONCENTRATION SKILLS

We need different strategies to keep kids engaged in learning, especially for children with sensory processing difficulties like sensory seekers and sensory avoiders. Providing them with tactile, oral, or movement sensory input can help them stay calm, focused, and on task. The pack includes a Zip-A-Dee zipper bracelet, a colourful lava lamp, and a super soft Rainbow Sqwooz squeeze ball. RRP $29.50 skillbuilders.com.au

Mindfulness apps like Headspace provide guided exercises and activities to help children enhance self-awareness, attention, and emotional regulation. Headspace has specific mindfulness activities for kids, with five themes: Calm, Focus, Kindness, Sleep, and Wake Up. Three different age groups are catered for - under 5, 6 to 8, and 10 to 12, and each has a role for parents. Teens will also benefit from the app. 14 days free then, followed by a paid subscription of $19.99 per month. headspace.com

MEMORY CARD GAME

This hand-illustrated Memory Card Game features 12 pairs (24 cards in total) of fun, easy to follow yoga pose cards that, when matched, can be replicated by your child. The cards will inspire your children to learn, while enhancing their concentration and cognitive function and encouraging mindfulness plus physical movement. RRP $39.95 sensorytools.net

& Watches Reads

Books and shows on our radar right now…

STRIPEY THINGS

Stripey Things tells the story of a neurodivergent child going through sensory overload while on her way to school. Throughout the story, young neurodivergent readers have the opportunity to learn a breathing technique that can be used in a number of situations.

“Stripey Things was a simple book, printed at home, that I would read for my daughter before going to places - specially school, as she would feel overwhelmed by the cross walks (the stripey things, as she calls It). My hope is that children, neurotypical or neurodivergent, can feel understood and supported through this simple, yet, helpful book when going through sensory overload.” Naya (Author of Stripey Things) nayainstitute.com/stripeythings

A CURE FOR VIVIAN

A Cure for Vivian is a heartwarming that celebrates the bond between siblings. A little girl called Evelyn goes in search of a cure for her baby sister, Vivian, who has an unknown illness. Evelyn encounters three mysterious creatures, who each give her a golden magical gift. Are they truly cures as she had been made to believe? Will her sister finally be cured of her illness? Or did Evelyn always have something even more powerful to give, that would be everything Vivian could need? namdarbooks.com.au

Listen!

LISTENABLE KIDS

‘ListenABLE Kids’ is a space for like minded and aged young adults to have conversations about the lived experience of their disabilities. Grab your headphones and listen to the fabulous Emily Prior chat to international Powerchair Hockey superstar Daniel O’Brien and up and coming tennis star and entrepreneur, Josh Brass. facebook.com/ListenablePodcast

CHLOE AND THE HAPPILY EVER AFTER

We are loving watching Chloe Hayden’s rise to fame. Chloe was diagnosed as autistic at the age of 13 and was selective mute for many years. With a passion for Disney princesses, Chloe found her voice online as a ‘princess’ and now stars as Quinni in Heartbreak High. Fresh off the back of a Logie’s nomination comes this documentary on ABC Compass where Chloe takes us a little deeper into her world. iview.abc.net.au

THIS IS GOING TO BE BIG

This documentary premiered at the recent Melbourne International Film Festival (MIFF) and it sounds absolutely wonderful. Every two years, the Sunbury and Macedon Ranges Specialist School’s Bullengarook campus puts on a play; peek behind the curtain as a cast of neurodivergent teens prepares to come of age and hit the stage in their school’s time-travelling, John Farnham–themed musical. Keep an eye out for wider release details. miff.com.au

BATHROOM AIDS

Bathroom aids provide increased accessibility, safety, and independence in every day personal self-care skills. Here is a great selection for all ages, some you’ll find at our national expos. Come ‘n’ try!

HAVE YOU ALSO CHECKED OUT OUR LATEST ASSISTIVE TECH EGUIDE

FOR BOTH BATH AND

SHARKY BATHROOM CHAIR

Weight: Up to 60kg | Height: Up to 165cm

• A multifunctional commode for bath and shower use that is versatile, practical and functional.

• A tilt in space mechanism, ensuring safe tilting of the user whilst showering. Height adjustment is easy to operate.

• Available in two sizes, it can be used over a toilet and when paired with the bath frame adapter, can be taken off the mobility base, and used in the bath.

STARFISH PRO

Weight up to 150 kg

Height 120cm to 200cm

• A combined shower and toilet chair that has easily adjusted configurations and a patented seat design to accommodate challenging postures.

sourcekids.com.au/atguide

• Recline and tilt; adjust support for seat, backrest and height.

• Comfortable pressure relieving cover material specifically designed for hygiene situations.

HTS (HYGIENE AND TOILETING SYSTEM)

Weight: Up to 113kg

Height: 76cm to 188cm

• Available in 3 sizes. Adjust support: seat, backrest, height.

• All in one toileting, showering and bathing system.

• A wide range of adjustments and as your child grows, the chair can adapt ensuring years of use. As a shower/commode chair can be used on the toilet or on its own.

WAVE BATH CHAIR

Weight: Up to 113kg | Height: N/A

• 3 sizes available, with recline and adjustable support – seat, backrest and height.

• Full leg lower support with optional calf rest, plus a full range of components including head blocks, leg straps and chest straps.

• Offers a variety of bathing and showering options including tub stand, shower stand and a unique swivel tub transfer base that’s easily stored away.

SEAHORSE PLUS

Weight: Up to 125kg

Height: N/A

• Adjustable seat, backrest and height support.

• Simple push button locking tilting mechanism for ease of operation and security.

• Designed for use over most standard toilets. The seat can be raised or lowered for optimum use. Has four tilt in space positions and is suitable for use under a shower or as a toileting chair.

RAZ CAT

Weight: Up to 115kg

Height: N/A

• Recline and tilt, with adjustable support

– seat, backrest and height.

• The depth-adjustable back provides growth capability.

• A fully custom shower commode with options for lateral supports, headrest, moulded seats and more.

REGISTER FOR FREE TICKETS

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

GOTTAGO

Weight: Up to 70kg

Height: N/A

• A portable toilet seat which makes toilet training easier for families of children with additional needs.

• All packed into an easy to carry backpack, it has 3 height settings: potty height, standard toilet height and disabled toilet height.

• Warm touch, wipe clean and easy set up or put away which makes for toilet time success.

SPLASHY

Weight: 5kg to 55kg

Height: N/A

• Backrest recline; upright to full recline. No tilt.

• Bright colours with 3- or 5-point harness option and additional adjustable support bumpers.

• A portable, light weight and support seat that works for bathing or messy play!

HERON

Weight: Up to 130kg

Height: Up to 185cm

• Quick release or swingaway support for easy access of user.

• Hydraulic or powered height adjustment and tilt in space reducing carer strain.

• Optimum positioning achieved with a large variety of accessories.

ANCHOR BATH CHAIR

Weight: Up to 70kg | Height: N/A

• Angle and height adjustable; depth adjustable.

• Comes standard with headrest, two standard size positioning straps, and foot straps.

• Provides a carefree bathing experience for children and caregivers. Safety and comfort is a priority, so the child looks forward to bath time.

SURFER BATHER

Weight: Up to 50kg

Height: Up to 135cm

• Recline only and adjustable height support. Backrest can lie flat.

• A powered elevating bath lift which helps to minimise moving and handling risks for parents and carers.

• Holds a child securely in the seat as they are lifted in and out of the bath. Includes headrest, protective harnesses and a pommel for support.

ADVANCED BATH CHAIR

Weight: 10kg to 72kg

Height: 75cm to 135cm

• Available in four sizes.

• Backrest recline and tilt with adjust support: seat backrest and height.

• Pelvic, trunk and head support with adjustable hip and chest belt with integrated lateral supports.

JOBETTE

Weight: Up to 125kg |

Height: Up to 170cm

• A dual-use chair that can be used on the beach as well as in the shower, perfect for families on holiday who want to pack lighter!

• Tool-free assembly and pack-down.

• Optional accessories to enhance comfort –including canopy and inflatable supports.

FLAMINGO

Weight: Up to 70kg | Height: N/A

• Available in four sizes and can be placed over the toilet or used with a pan.

• Tilt in space and back recline for comfort and positioning.

• Has adjustable foot supports, a height adjustable frame, and is foldable.

JUNIOR SHOWER TROLLEY

Weight: Up to 170kg | Height: Up to 150cm

• Adjustable height support – hydraulic or electric.

• Compact paediatric size shower trolley.

• Mattress available in 40 different colours. Product allows for showering in supine when shower chairs do not provide enough support.

SEATARA

Weight: Up to 120kg Height: 40cm x 40cm seat size

• Foldable and portable commode and shower chair.

ORCA

Weight: Max 50kg | Height: Max 100cm

• Lightweight and easy to disassemble allowing ease of transportation.

• Height adjustable frame reducing carer strain.

• Use with multiple different bath seats including the Penguin, Flamingo and Manatee.

• Comes in a wheeled travel case marked with universal wheelchair symbol for transportation by plane.

• Self-propelling rear wheels, designed to keep the chair manoeuvrable in narrow spaces.

SOFT TOUCH POTTY SEATS

Weight: Up to 90kg | Height: Up to 188cm

• Available in two styles – round or elongated, and in four colours to suit every home.

• Soft to touch material for improved comfort and support.

• Includes a waterproof carry bag for improved hygiene when on the go.

SUPPLIERS

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

Thinking of respite? Think Allowah.

For some families, specialised respite care can provide the break that parents and carers need to recharge.

Allowah is a home-away-from-home for many kids and teens who have complex disabilities or health needs If your child requires a high level of support, or sometimes need medical care as part of everyday life, finding suitable respite accommodation can be a challenge.

Allowah is both a trusted disability support provider and an experienced paediatric rehabilitation hospital - all in one place.

Our team of passionate staff includes both support workers and nursing staff who work together to ensure kids are well cared for clinically, while enjoying activities and stimulation suited to their strengths and abilities If you're exploring respite for your child, get in touch and find out if Allowah is right for you.

"I don't think we'd be where we are today, without this place. The level of care that Sophie receives here at Allowah is nextlevel. It's saved our lives, hon

Respite Stays

A respite stay allows carers the opportunity to take a muchneeded 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.

- Rebecca, Sophie's m