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AUTISM The state of play in Australia
THE ROAD TO DIAGNOSIS
Learning to be Autistic PLUS…
ONE FAMILY’S SDR JOURNEY
GUIDE TO EQUINE FACILITATED LEARNING
INTRODUCING OUR SOURCE KIDS BRAND AMBASSADORS
Parenting a child with an invisible disability Behavioural, emotional and sensory regulation products
REPLACING ASSISTIVE TECHNOLOGY UNDER NDIS
RESILIENCE IN THE FACE OF ADVERSITY
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inside FEATURES & ARTICLES
SPOTLIGHT ON AUTISM 10
Autism – the state of play in Australia
Autism, the road to diagnosis
Kiddies Food Kutter and Safety Food Peeler
18 Learning to be Autistic
If you haven't seen these awesome kids' safety products before, here's what you need to know…
The ‘Original’ Kiddies Food Kutter has a stainless-steel blade with rounded teeth and no sharp edges – so can't cut little fingers! It cuts all fruit and veggies – raw and cooked – and even meat on the dinner plate!
Parenting a child with an invisible disability
26 Behavioural, emotional and sensory regulation products
The Safety Food Peeler is designed for left or right handers, the elderly and people with disabilities. All Australian made and owned, BPA free and dishwasher safe.
30 6 Activities for the Easter holidays to boost your child’s literacy skills 31
Easter fun in the kitchen
32 My mum and me, celebrating Mother’s Day with you! 38 Introducing our brand ambassadors 46
Our SDR journey
BUY A 4-PACK AND YOU WILL GET ANOTHER TWIN PACK FREE! Coupon Code: SKFree2Pack (Finishes 31 May 2020) This fantastic offer is available online only and for postage within Australia.
52 Resilience in the face of adversity – how can parents stay buoyant and calm? 56
Let’s go camping
58 Camping kit to help you enjoy the great outdoors! 60 A guide to equine facilitated learning 63
NDIS tips: replacing assistive technology
64 Preparing your child and family for natural disasters 66
Product review: car seats and restraints
Tubie Fun – feeding sets
What’s on calendar
Tubie Fun is a collection of personalised feeding tube accessories and more for your child. Stacey was fed up with the clinical colours from the hospital, so decided to create feeding covers that were bright and colourful, just like her child’s personality! Stacey at Tubie Fun has a great selection to choose from on her website, or if you have something particular in mind, get in contact with her to see what magic she can work! www.tubiefun.com
! @tubiefun www.sourcekids.com.au
we love 'REMINDABLES’ BAG TAGS Remindables are colourful clip-on reminder tags for your child’s school bag to help remind them what they need to pack and what needs to come back! Remindables are a fun way to help your kids stay organised at home and at school. As a visual prompt, they will enable your child to increase their independence, as well as enhancing responsibility, decreasing anxiety, supporting memory and developing organisational skills. www.remindables.com.au
Night N Day Comfort As our kids grow, they just want to be like their friends and these leak-free incontinence undies from Night N Day Comfort – that look and feel just like regular underwear – will help them do just that! They’re Bonds branded too – just like mum and dad’s! The Night N Day x Bonds range of leak free undies provides up to 400ml of discreet and leak-proof protection and are great for day-time use – no more stress and anxiety while getting changed for swimming classes or other sports! Night N Day Comfort is a registered NDIS provider so you can purchase their whole range through your NDIS package. For more info shop online at www.nightnday.com.au or call 02 9531 2011.
Ambitious new social learning platform launched
Wonderchums is an inspirational social learning platform driven by creativity and inclusion. Kids receive interactive animated learning packages each month that prompt real-world creative and social adventures led by the adorable Wonderchums characters! The Wonderchums mission is to give all kids experiences of inclusion, aiming to share the powerful effect it has on a child's natural ability to build meaningful friendships, appreciate their own special qualities and grow up to be collaborative problem solvers for a bright future. If you want to expand your child’s personal growth to be rich with experiential learning and a new community of friends, then check out them out at: www.wonderchums.com
BRAVER THAN YOU THINK Every parent wants the best for their child. But if your child has been diagnosed with a developmental delay or disability, there can be a lot of uncertainty. Braver Than You Think will help you in your journey as a parent of a child with a disability. In this book, you will learn the 5 BRAVE principles to help you help your child live their best life. Author, Emily Hayles discusses the importance of early intervention and that "diagnosis is not prognosis". Emily’s book can be purchased from www.moveplaypaedtherapy.com.au/braver-than-you-think
!$ @moveplaypaedtherapy www.moveplaypaedtherapy.com.au
TO SOURCE KIDS
2020 – A new year, a new decade and a bunch of new things at Source Kids!
SOURCE KIDS LIMITED
Hold onto your seats…2020 is shaping up to be one of our biggest years yet here at Source Kids and we can’t wait to take you on the ride with us. There’s so much brewing and we’re busting with excitement to unveil all of our new projects and initiatives with you all.
Send all letters and submissions to: email@example.com
We are kicking off the year by announcing our new Source Kids Ambassadors! We were overwhelmed with the response to our search and we are thrilled to introduce our very first set of amazing young people who will be our ambassadors for 2020: Finley Coll (QLD), Brydi Saul (QLD), Riley Saban (NSW) and Kai Seymon (VIC). Find out more about them and their families on pages 38-41. We will be sharing the adventures of our ambassadors during the year across social media and at our expos. Speaking of expos... I was all set to share with you the excitement of our first Source Kids Disability Expo in Melbourne in April to kick off our expo program – but we have had to make the difficult, but correct decision to postpone this event, due to the Coronavirus outbreak and the likely impact on large public gatherings in Victoria following the Victorian government announcement. We are so disappointed to postpone this event but the health and safety of our event attendees and exhibitors is our main priority and delivering an event that everyone benefits from without the worry of contracting the virus. But don’t worry, we won’t be cancelling the expo, just postponing! At the time of going to print, we will likely hold this event in August 2020, so keep an eye on our Facebook page and we will let you know our new dates asap! And in more breaking news… In the next month or two we’ll be revealing something big... a new brand, a new community, new content, a new Source...and, it’s for you! That’s about all I can tell you right now without completely giving it away, so watch this space and all will be revealed shortly! And before I sign off, we’re super excited to release this issue of Source Kids; it’s been a long time in the making but this issue the spotlight is on autism. We look at the state of play in Australia, the road to diagnosis, a personal account of learning to be Autistic, parenting a child with an invisible disability and we’ve pulled together some great behavioural, emotional and sensory regulation products. Other topics we explore include one family’s SDR journey, resilience and how parents can stay buoyant and calm, camping, equine facilitated learning and so much more. I hope you all enjoy the read and can’t wait to share our new journey with all of you this year, or should that be decade?!
WRITERS AND CONTRIBUTORS Nicole Davis, Rachel Williams, Emma Price, Kelly Wilton, Kerry Smith-Amato, Ebony BirchHanger, Amrita Das, Helen Bourke-Taylor and Elaine Russell.
ADVERTISING Naomi Sirianni – 0447 755 043 firstname.lastname@example.org Carmen Smith - 0438 847 696 email@example.com Rachel Munro-Murphy – 0447 436 837 firstname.lastname@example.org
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GRAPHIC DESIGN Richard Deverell, Dev Design & Creative www.devdesign.com.au
PUBLISHER/CEO Emma Price Editorial and advertising in Source Kids is based on material, written and verbal, provided by contributors and advertisers. No responsibility is taken for errors or omissions, and opinions expressed do not necessarily reflect those of the publisher. All material in Source Kids is subject to copyright provisions. No part of this publication may be reproduced without written permission by the publisher.
DISTRIBUTION Source Kids is distributed through therapy centres, hospitals, paediatricians, special needs schools and early intervention centres. For distribution enquires, contact firstname.lastname@example.org
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The Source Kids Disability Expo is coming back to Melbourne! Focused on children, youth and young adults â€“ this expo brings together the latest products, services and technology under one roof for two days. Come along and find, test and talk with providers and have a great family day out.
Register now for your FREE tickets: www.sourcekids.com.au/disability-expo
we love SOURCE KIDS
Children with neuro-developmental conditions such as ASD, ADHD and sensory processing disorder often need a different approach to therapy and we’ve found something that’s been a hit with one of our Source Kids! Brain Train is a NDIS Registered OT-based neurodevelopmental and sensory-motor therapy program (read more about this on page 12) to integrate reflexes and develop a more efficient neuro-motor network, with fun movement, play-based activities to help speech, anxiety, meltdowns/ tantrums, social interactions, sensory issues and more. The program consists of 28 sessions over the course of 14 weeks with centres located in Sydney, Melbourne and Brisbane. With activities that encourage the body to coordinate bilateral movements, execute midline crossing and master movements that require balance and gravitational control – your kids will be challenged and have a whole heap of fun along the way! If you want to learn more about Brain Train or book your free consultation visit www.thebraintrainco.com or call 1300 209 634.
– stickers breaking down stigma! Diversely Human is a community created by Regina Underwood to bring attention to, and raise awareness of, neurodiversity. Regina’s own lived experience with mental health and disability within her family is the driving force behind the creation of this terrific space. To check out Diversely Human’s range of funky stickers, apparel and great gift ideas, head to www.diverselyhuman.com
!$ @diverselyhuman 8
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AUTISM IN AUSTRALIA
BY RACHEL WILLIAMS
THE STATE OF PLAY IN
Clinical and political systems are not keeping up with the needs of individuals on the autism spectrum who should be benefiting more from the amazing research inroads being made into the condition. And the general public is also being urged to take a more proactive and understanding approach to assist the more than 205,000 Australians living with the neurodevelopmental condition. They are the main issues being dealt with by nationally respected autism researchers and advocates – with a new public awareness campaign and ongoing research ensuring that the needs of autistic people and their families are met. 10
Those at the forefront acknowledge that the system has drastically improved but concur that more needs to be done. Professor Andrew Whitehouse, from the Perthbased Telethon Kids Institute, has been researching autism for 20 years and is optimistic about what will be achieved in the next few decades. He says he’s become addicted to helping, having first encountered autism following a family friend’s diagnosis; an interaction that he says quickly changed him from being a “hedonistic teenager”. “I watched their experience of struggling to understand why they were developing differently and to gain a diagnosis and it knocked the wind out of me,” Prof. Whitehouse recalls. Every person experiences autism differently. Many experience difficulty with communication
and interacting with others, display repetitive and different behaviours, move in different ways, have a strong interest in one topic or subject, show unusual reactions to what they see, hear, smell, touch or taste and have a preference for routines. Professor Whitehouse has dedicated his career to researching early intervention to lessen the impact on those with autism and their families. “Our research focus is on how to give families the best start to life we possibly can with the clinical pathway of identification, diagnosis, intervention and discovering where the gaps are,” Prof. Whitehouse explains. “There is a uniform diagnostic process across Australia but now it’s about finding where the pain points are that provide road barriers to families.” It’s a challenge also on the agenda of Nicole www.sourcekids.com.au
proactively to referrals of children this young and so we miss those valuable years,” he says. “We are now looking at how some children are developing differently from when they are little babies and what we can do to support areas of brain development in areas such as communication or movement abilities. “Babies have very important steps in communication and social development in life and there might be differences right from the start with how babies communicate and so we can encourage parents with techniques to help them nurture brain development from the very first moments of life.”
Rogerson, the founding Director and CEO of Autism Awareness Australia. Nicole says the National Disability Insurance Scheme has been a real game-changer – especially compared to when she was navigating a system that favoured only the rich. Nearly 30 per cent of participants in the NDIS are autistic but Nicole says the scheme is bureaucratic, cumbersome and definitely far from perfect. “We know the smallest packages of funding are going to children under 6 and this is not acceptable. We know it’s the 'early' in early intervention that is so important,” she says. “There are still massive waiting lists for diagnostic services within the public hospital system. Parents in some locations in Australia are waiting up to 18 months to get their child diagnosed. This is a very stressful time and this wait often delays a child starting early intervention, which is critical to helping them reach their potential. “We need to remember, little people grow up. We need to be making plans and working towards our children being as independent and happy as possible.” That’s why Professor Whitehouse is excited about a landmark program that involves babies who have an increased likelihood of having autism because of their genetic makeup. “Early identification and intervention is challenging. Research has told us that we can identify some children on the autism spectrum quite early in life, but our clinical and political systems are not necessarily geared up to respond quickly and
Unlike many conditions where there is a clear reason why someone is born with or develops a disability, there is no one biological pathway that leads to the development of autism. Professor Whitehouse says that should be celebrated. “It stops us looking at simply molecules and we look at them as precious little humans to nurture and understand and help them on their extremely unique journey and that is extremely liberating,” he says.
“Worryingly, 64 per cent of autistic Australians say people actively avoid them while 59 per cent have reported being described as ‘weird’. “It is important for Australians to remind themselves that autistic people are not disabled by their autism but mostly by how others respond to it.” While the public is being moved towards acceptance, it is the political arena that still needs more attention. The Senate resolved to establish a Select Committee on Autism to inquire into and report on the services, support and life outcomes for autistic people. The closing date for submissions is April 14 but a final report isn’t expected until October 2021. “None of the issues about autism are new or terribly difficult to work out,” Nicole says. “We need better more timely diagnostic services, we need to regulate quality early intervention, we need a National Strategy for the education of children with autism in our schools and we need better transition to work programs for adults and young people.”
“Twenty years ago the notion of a cure was a research goal but there has been a dramatic shift in the way researchers work and a cure is not a worthy goal anymore, because people with autism have so much to contribute to our society simply because of who they are.”
It’s hoped the Amaze ‘Change Your Reactions’ campaign, which is being rolled out across regional and metropolitan television, print, radio, digital and social media, will have tangible positive impacts while those with autism wait for political will to change.
That’s the exact view of Amaze CEO Fiona Sharkie, who recently launched an Australian-first campaign titled ‘Change Your Reactions’.
“Amaze has undertaken extensive research about what autistic people, their families and carers want the community to know about autism,” Fiona explains.
The campaign promotes a more inclusive community that understands, accepts and positively engages with autistic people. “There has never been a social behaviour change campaign to promote understanding and inclusion of autistic people in Australia,” Fiona says. “Only 29 per cent of Australians know how to support an autistic person, but only 4 per cent of the autism community feel others know how to support them. “Many autistic people have reported being treated harshly and judged unfairly by the public in the way they are described and how people react to them. “In fact, 53 per cent of autistic people said they have been described as ‘naughty’ and as many as 70 per cent have been described as ‘anxious’ while a staggering 81 per cent report having been stared at by people in public.
“That young boy you see in the supermarket becoming agitated at the check-out, his mother doing everything she can to stop the meltdown she knows is coming, doesn’t need you to stare or tell her that her child simply ‘needs discipline’. She needs your help.” Australians can learn more about how they can change their reactions and pledge to support autistic people and their families in the community at www.changeyourreactions.com With World Autism Awareness Day being held on Thursday, April 2, Autism Awareness Australia is promoting its upcoming AUStism events – stories to challenge, inform and inspire. They’re being held in Sydney, Melbourne and Brisbane with details on the organisation’s website www.autismawareness.com.au.
“I WATCHED THEIR EXPERIENCE OF STRUGGLING TO UNDERSTAND WHY THEY WERE DEVELOPING DIFFERENTLY AND TO GAIN A DIAGNOSIS AND IT KNOCKED THE WIND OUT OF ME” Professor Andrew Whitehouse
In association with
What is a neurodevelopmental program and how can it potentially support my child? Autism Spectrum Disorder (ASD), ADHD, Sensory Processing Disorder and many other developmental challenges are often described as neurodevelopmental conditions – i.e one that is directly related to the development of the nervous system. At its core, a neurodevelopmental program will evaluate and work to support children with these conditions and is generally focused on supporting and targeting the nervous system. Treatment and therapy options for anyone with a neurodevelopmental condition are wide and varied. There are the traditional, well-known and evidence-based therapies such as OT, physio and speech therapy, and then there are an increasing number of options that are more recent in their developmental timeline and as a result may not be backed by a large body of scientific data despite numerous accounts of anecdotal evidence of their effectiveness. One program that falls into the latter category, but one that we are starting to hear more about is neuro-developmental and sensory-motor
therapy which targets the consolidation of reflexes throughout the body whilst improving the efficiency of neuro-motor and sensory-motor pathways. We know that during infancy the brain and body are controlled by a set of primitive reflexes that help babies respond to stimuli in ways that both protect them and initiate exploration. In neurotypical development, with practice and over time, these primitive reflexes are suppressed as the frontal lobes of the brain develop and the child plans, accesses, and uses more efficient neuromotor pathways. In children and adults with atypical neurology however, these primitive reflexes may be retained or reappear. Neurodevelopmental programs are built on the premise that retained reflexes impede the development of efficient neuro-motor and sensory pathways; that movement and sensory input are critical to efficient and optimal human brain development. And many of the symptoms and challenges presented by children with autism and other atypical neurology are at their core, a function of inefficient neural pathways. Supporters of the approach believe that rather than developing typically, the brain of a child with autism is often so focused on preservation and survival through the fight or flight response that it impedes the typical suppression and integration of primitive reflexes through the neurodevelopmental movement patterns and stages that a typically developing child would go through.
As a result, the autistic child may have nonintegrated reflexes and inefficient neural pathways and neuro-motor connections which can impact all areas of their functioning and daily lives. The aim of a neuro-developmental and sensorymotor therapy program is to integrate reflexes and develop a more efficient neuro-motor network, in an attempt to improve the brain-body connection. This is often carried out through an OT-based approach but can border on physiotherapy in style, offering neuro-based movement, challenge and a whole heap of fun along the way. One approved NDIS provider of this approach in Australia is Brain Train who have centres in Melbourne, Sydney and Brisbane. Helping children with special needs to find their voice and to thrive in a world that really doesn’t make sense to them, is at the heart of Brain Train’s DNA. The company was founded by Marietta and Justin Goddard and Paula Fabiani after researching and participating in the world’s best practice in neuro-developmental, occupational and play-based therapies for children with neuro-developmental challenges. Neuro-developmental therapy was a critical part of their daughter Chloe’s journey with autism, ADD, sensory processing disorder and dyspraxia and it paved the way for their holistic and functional ‘move, activate and integrate’ neurodevelopmental program. They believe that it was the game changer that improved her health and happiness significantly and changed the trajectory of her life in a positive direction. The Brain Train program consists of 28 sessions over the course of 14 weeks and can potentially help children with a number of conditions including:
Autism Movement-based activities to help speech, anxiety, meltdowns/tantrums, social interactions, sensory issues and more. Emphasis on restoring health
Brain Train’s program is a lot of fun and helps build confidence and character as well as competence in many core skill areas.
and optimising function, including the opportunity for play-based engagement to assist with communication and socialisation goals.
and connections, so the brain and body start to work synchronously.
A number of facilitators on the Brain Train team (including their founders) have direct, family experience with autism and other developmental challenges. Their mission is a personal one and they’ve created an environment based on the need to serve children and adults with neurological challenges and special needs in a caring and non-judgmental way.
A drug-free program to assist with focus, irritability, anxiety, learning and all areas of well-being.
Sensory Issues The play-based activities develop the ability to cope with noisy/busy environments and manage change without becoming overwhelmed.
Neuro-developmental challenges According to Brain Train the program integrates reflexes and builds efficient neural pathways
Brain Train’s program is a lot of fun and helps build confidence and character as well as competence in many core skill areas. Whilst neuro-developmental style training can be very challenging neurologically, their facilitators are trained in play-based teaching models and invariably both children and adults are engaged and having fun but are really working quite hard. If a child doesn’t develop automatic control over balance and motor skills, emotional behaviour and many aspects of learning can be affected, for example, vestibular processing, proprioception and visual perception collectively allow for balance and coordination and subsequent behaviour and learning. Brain Train’s program provides a unique environment for children to engage in foundational, transitional and functional movement. Sessions consist of specific activities that encourage the body to coordinate bilateral movements, execute midline crossing and master movements that require balance and gravitational control. As an NDIS provider some of the goals Brain Train targets include: • Improve independence (eg. self-care tasks such as bathing, dressing and going to the toilet) • Enhance gross motor skills (eg. walking, running, catching and throwing for improved participation in outdoor activities and/or sport)
• Enhance fine motor skills (eg. improved pencil grip for handwriting and drawing, using cutlery, and tying shoelaces) • Develop social skills for improved social interactions at home and the wider community (eg. improved engagement with and awareness of others, and greater focus and coordination for play) The Mortons are one family who have taken their two autistic children through the Brain Train program and report significant results. According to mum, Danielle before attending the Brain Train facility in NSW her children couldn't interact with peers, play on their own, or even continue play they instigated, nor could they regulate their emotions and reactions to their environment. Danielle says that Brain Train has given them independent play, social play between siblings, role play with dolls and cars as well as an ability to sit/ lay still to talk and cuddle. Not to mention the social peer interaction. She adds that “the co-ordination both our children have gained sees them confident in climbing play equipment, setting up obstacle courses and for us as parents – the fact they now go off and play at a park is life changing. There are no more 2.5 hour meltdowns, now I watch in awe and with love for a child that is becoming a calmer part of her world.” If you want to know more about the Brain Train Co and their services visit www.thebraintrainco.com/ or call 1300 209 634
THE ROAD TO DIAGNOSIS
BY KERRY SMITH-AMATO, PAEDIATRIC PSYCHOLOGIST
the road to diagnosis service providers (e.g. paediatrician, psychologist, speech pathologist, occupational therapist). The child’s Assessment Report will also be used by Government agencies, schools, respite care and other services to determine eligibility for funding or other support.
HOW AM I SUPPORTED AFTER MY CHILD’S ASD DIAGNOSIS? Some families feel a sense of relief after what is often a long period of misunderstanding around what may be happening for their child. This is also a period where families may be very emotional and have a lot of questions and be in need of support.
There is a multitude of paths that may lead to an assessment for autism spectrum disorder, but many parents initially note that they are worried about their child’s development. They, someone close to them, or an educator may have noticed that their child’s speech is delayed, or that they seem difficult to engage with and are somewhat detached from them. Parents may have concerns due to their child’s behaviour – emotionally and physically. Whilst there are many possible reasons for developmental delays in children, one of the possibilities could be autism.
HOW DO I GET MY CHILD ASSESSED FOR AUTISM SPECTRUM DISORDER? If you have any concerns about your child, it is always best to start by talking about these with your GP. If their medical opinion is leading towards the possibility that the behaviours or developmental delay is due to the child having autism, they will then refer you to a paediatrician who will discuss your concerns and the issues you and your child are encountering and then refer you on to a team of professionals for an autism assessment. This team will consist of a psychologist, a speech pathologist and the paediatrician. These professionals will carry out a series of different assessments over several appointments. At the completion of the assessment, the team will decide if your child meets the criteria for a diagnosis of 14
There are many therapies and interventions that can help autistic people develop their social interaction and communication skills. With the right help and support, great outcomes can be achieved. Amaze have Autism Advisors who are extremely knowledgeable, caring and helpful who are able to be contacted on 1300 308 699, email info@amaze. org.au or use the webchat on the Amaze Website for more information. Autism Spectrum Disorder (ASD) and a diagnosis will be made. An ASD diagnosis is made across all age groups, from the age of about 18 months and up. A provisional diagnosis may be made by the team when the child is very young, to be followed up by a later reassessment. The options for families to seek an ASD assessment include: • government-funded teams that specialise in the assessment and diagnosis of autism. • Parents contacting private practitioners and teams who conduct ASD assessments directly on a fee-paying basis, through a GP, then a paediatrician. Amaze (previously Autism Victoria) can help you locate an autism assessment team. Contact the Amaze Autism Advisors on 1300 308 699, email email@example.com or use the webchat on their site for more information.
WHAT HAPPENS AFTER WE RECEIVE A DIAGNOSIS OF AUTISM SPECTRUM DISORDER? Most importantly, your child is not changed by receiving a diagnosis. A diagnosis is intended to provide understanding, guidance and funding to support someone to reach their full potential. After an ASD diagnosis is made, a copy of the Assessment Report will be given to the parents. This report will provide information around the assessments undertaken and a thorough description of how your child meets the criteria required for an ASD diagnosis. The Assessment Report also contains recommendations to assist in planning a course of intervention for the child with
WHAT DOES THIS MEAN FOR MY CHILD AND US AS A FAMILY? As the diagnosis of ASD is for life, families will be concerned about their child’s immediate and long-term wellbeing. What exactly does this new diagnosis mean for their child, and them as a family? This will be different for every individual. Fortunately, there are many things that families and the individual with ASD can do to learn more about autism. There are several support groups around Australia, set up by people who do a wonderful job of providing safe, supportive spaces. These groups enable people with ASD and their families to connect with people who have shared experiences, and get support to live a healthy, happy and fulfilling life. Spending time among the autistic community learning from people on the spectrum can also help immensely.
HOW DO I TELL MY CHILD AND OTHERS ABOUT THEIR ASD DIAGNOSIS? This is a personal decision and there is not one specific way to do this. When you feel comfortable about sharing the autism diagnosis with your child’s family and friends, it may be difficult to know exactly how to do this. Amaze have information on their website which will assist in determining how and when to share your ASD diagnosis. Information from this article is drawn from the AMAZE website www.amaze.org.au. Kerry is a Paediatric Psychologist practicing from consulting rooms in Camberwell and Brighton. She provides psychological services to children, adolescents and their families. For more information contact firstname.lastname@example.org or call 0414 385 974. www.sourcekids.com.au
RESOURCES FOR FAMILIES OF AUTISTIC CHILDREN From websites to support groups and social media hubs there are a multitude of destinations out there to assist you and your child, but determining what’s really useful and valuable can be overwhelming. Here are some of the resources that we think are a great place to start...
Amaze downloads and online learning Amaze has a wide range of evidencebased resources for autistic people, family members, professionals and educators. The materials are developed in consultation with autistic people and their families and reviewed by subject matter experts to ensure they’re respectful, accurate and practical. We especially love the useful, practical information sheets for parents, families and carers and the ones for people with autism. www.amaze.org.au/support/ resources/downloadable-resources
Aspect Another organisation with useful fact sheets to download is Autism Spectrum Australia (ASPECT). Topics covered include tackling bullying, siblings, mental health and wellbeing, positive behaviour support and more. Aspect have also recently released the Autism Launchpad – a website dedicated to information and supports for teens and young adults on the autism spectrum. Each section on the site is divided into two tabs – one containing info targeted at young people, the other has relevant info and resources for parents. www.autismspectrum.org.au/ about-autism/fact-sheets www.autismlaunchpad.org.au
Autism Awareness Australia The goal of Autism Awareness is a simple one: “to improve the lives of all Australians on the autism spectrum and the families who love them.” Resources include campaigns, events, quality information and educational programs for families, professionals and the wider community. www.autismawareness.com.au
Autism CRC If you feel like you want to go a bit deeper and you’re ready for some in-depth information and validated research then your first stop should definitely be Autism CRC – they are the world’s first national cooperative research effort focused on autism across the lifespan and their website is a vast repository of informative publications and reports. www.autismcrc.com.au/
ASD Matters A private Facebook group with over 18,000 members. They state that they’re ‘A group for families (predominantly in Australia) to socially network, that is full of information, lovely helpful and supportive members, it’s a place to share experiences, ask questions, to just connect with other people in similar circumstances.’ www.facebook.com/groups/ asdmatters
Autism Discussion Page A Facebook page set up by By Bill Nason, MS, LLP – a mental health professional, behaviour and autism specialist – to share tools that help children on the spectrum “feel safe, accepted and competent.” https://www.facebook.com/pg/ autismdiscussionpage
Autistic Not Weird A Facebook page set up by Chris Bonnello, a former teacher with Asperger Syndrome turned autism speaker. Autistic Not Weird exists to educate readers about autism issues and life from autistic perspectives and to provide support to autistic people and also to their families, sharing ideas and insights on how best to help them.
Girls and Autism – Parenting Girls on the Autism Spectrum A Facebook page set up by Eileen Riley Hall, author of the book of the same name and mum of two amazing daughters, one with autism and one with Asperger’s. www.facebook.com/AutismGirls
The Thinking Person’s Guide to Autism Thinking Person’s Guide to Autism (TPGA) is a one-stop source for carefully curated, evidencebased, neurodiversity-steeped information from autistic people, parents, and autism professionals. The information provided on their website is clear, thoughtfully presented, balanced, and referenced. www.thinkingautismguide.com
I CAN Network The goal of the I CAN Network is to drive a rethink of autism from ‘I can’t to I CAN’. They mentor young people on the autism spectrum to live life with an I CAN attitude. They bring out the ‘awe’ in AWEtism through education, advocacy and providing opportunities, building networks across schools, unis, TAFEs, communities, businesses and governments. www.icannetwork.com.au
Autism Dads A Facebook group of dads of kids with autism. Offering support to each other, celebrating wins, consoling losses and generally talking about the unique experiences as dads in a slightly different world. www.facebook.com/groups/ AutismDadsAustralia
The Social Studio Based at The Sports Hub in Bokarina on the Sunshine Coast the Social Studio is a purpose-built studio catering to the needs of kids, teens and young adults living with autism, ADHD, social isolation or anyone who would benefit from being a part of their community. They provide special interest groups ranging from Art, Just Dance, Virtual Reality, Date Nights to programs in Lego, Life Skills and more to come! www.socialstudio.com.au
Different Journeys A VIC based organisation whose mission is to empower young people with ASD by providing them with a social platform of events to create positive connections, feeling of inclusion, and linking families with services and support. www.differentjourneysasd.com
ASteen Social Group ASteen from Autism Spectrum Australia is a Sydney-based parentcoordinated social group for teenagers aged 13 and over, with autism. ASteen aims to provide a safe, family-friendly environment for teens who can communicate and interact with others and are seeking friendship and development of social skills. There is no cost to join the group; just the cost of the outings themselves. Outings range from picnics, museum trips and movies through to putt-putt golf, ghost tours, and theatre visits. Email asteen.info@gmail for more info.
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They have no nasty chemicals are safe on baby skin, bambo cause no nasty irritations and are 100% toxin free. They are biodegradable and are environmentally friendly. I have used other nappies and these are by far the best quality around. I was so pleased to also find Atlas McNeil Community as they have this great product but at such a great price. Other sites may have this product but I believe Atlas McNeil Community recognize that babies go through a lot of nappies and have Bambo at a price that we can afford.
WILL BAMBO NATURE IRRITATE MY CHILD’S SKIN?
Bambo Nature products have been dermatologically tested to ensure that they do not cause skin irritation or allergy. This combined with strict criteria one must adhere to in order to be awarded the Nordic Swan Eco-Label accreditation, means that you are getting the best possible product for your child’s skin.
HOW DOES BAMBO NATURE COMPARE WITH OTHER BRANDS ON THE MARKET?
Like many brands, Bambo Nature features flexible side panels, a fully breathable back sheet, super absorbent core and top dry system that ensure a fast absorption and a dry surface. Through continuous improvement, Bambo Nature nappies provide an even softer textilelike back and top sheet. This point of difference makes the nappy feel like soft clothing on the child’s skin without compromising performance or quality.
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Lawrence was so helpful on the phone and I highly recommend this product and service as well.
Our continued commitment to developing positive relationships within the industry has enabled us to offer a diverse range of quality products that meet the changing needs and expectations of our customers.
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Bambo nappies and wipes are the most baby friendly nappies on the current market. After lots of hours of research and searching for the best product for my daughter, I discovered Bambo.
For our customers this created an increased ‘Community and Home Care’ offering led by dedicated specialists within the consolidated Atlas McNeil Healthcare business.
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ABENA SKINCARE OINTMENT PROTECTION AGAINST CONTINENCE RELATED INFLAMMATION There’s more to continence than pads and pull ups. Skin integrity is an area which can sometimes be overlooked. Incontinence Associated Dermatitis (IAD) is an inflammation of the skin that can occur when it comes into contact with moisture associated with incontinence. Abena Skincare Ointment is ideal for skin that requires extra care. With a high fat content and a skin pH level of 6.0, this product is suitable for dry and problem skin. The ointment has a regenerating effect on the skin, and water-in-oil emulsion with a barrier effect.
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RRP $141.00 OUR PRICE $99.00 Call: 1800 888 541 Email: email@example.com Web: www.amhcommunity.com.au MKT-116
A PERSONAL PERSPECTIVE ON AUTISM
LEARNING TO BE AUTISTIC A PERSONAL PERSPECTIVE, AND MY ADVICE TO PARENTS
BY EBONY BIRCH-HANGER
In the past, I believed that growing up without a diagnosis was a huge advantage for me. There were disadvantages, but I saw the opportunities I was afforded, and roles I was given, as positives. I do believe that if I had a diagnosis as a child, I wouldn’t have been given those opportunities because people wouldn’t have thought I was capable. But a couple of years ago, after watching a video by Paul Micallef, titled ‘How to support your Aspie friend’, I realised that I had been lying to myself my entire adult life. Not having a diagnosis as a child was not an advantage at all. It was a detriment, and a hindrance to me developing any true sense of identity, self-confidence and self-esteem. Paul explained that when someone on the autism spectrum spends their whole life masking, conforming to societal norms, and becomes very good at doing so, they often receive praise for their achievements and ‘typical’ behaviours. The person then equates that praise with the ‘mask’ and develops the belief that they are only truly loved and accepted when they suppress who they really are and pretend to be someone more socially acceptable. This is me, one hundred percent.
I am still on a pathway towards self-acceptance, which I define as ‘The ability to accept oneself whole-heartedly, for who you are, despite the thoughts or judgements of others.’ I have a long way to go and definitely believe that if I’d known about my diagnosis as a child, I would have already reached a place of complete self-acceptance. I find that although the end goal is for self-acceptance, receiving acceptance from others is a large contributor to starting along that path. So, surround your children with people who accept them unconditionally for who they are and don’t just tolerate them. Your child’s mental health is more important than anything and self-acceptance is an important contributor to positive mental health. I still want to share the praise and recognition that my mask has received, to highlight the potential for individuals on the autism spectrum to achieve, if given the right opportunities. Now, it was of course me, not just a mask, who gained all the achievements. I did do the work, and I did experience all the stress, anxiety and other challenges that came with those achievements. It’s just that other people weren’t seeing the true me. In infancy, there were signs that I was developing differently from most. I couldn’t suck when I was born, I screamed the house down when put on my back, I woke up crying every time my mother removed pressure from my body, and I banged my head against hard objects. My mother took me to doctors and paediatricians to be evaluated. She was told that because she was an over-worked,
single mother, she was stressed and probably over-exaggerating everything, and that was the end of that. So, I went through infancy, early childhood, primary school, secondary school and university, posing as a mainstream child and student. When I blocked my ears or chose to play alone, no one viewed these as autistic behaviours. In primary school, when I constantly gave instructions to other kids around how tasks needed to be done, or how to set up the classroom, I wasn’t seen as a bossy, inflexible autistic child. My teachers saw these behaviours as leadership skills which led to me becoming a house captain. My seemingly advanced ability to interact with teachers and my aptitude for lengthy one-sided conversations weren’t seen as an autistic inability to socialise with peers or obsessive thinking – they were recognised as maturity and a potential for activism. This led to me being given the Citizenship Award at the end of Grade 6. In secondary school, any ‘bossiness’ or withdrawal of myself from the yard to assist teachers or study, weren’t seen as negative behaviours or depleted skills due to autism. They were seen as leadership qualities, maturity and a focus on study that should be rewarded. This led to running assemblies and public speaking. My ‘hyper-focus’ on extra-curricular activities wasn’t seen as obsessive but rather as effort that lead to me receiving Performing Arts awards. I even completed work experience in year ten at a specialist school (upon my request) with individuals who had multiple and complex disabilities. I wonder if I would have even been
I AM STILL ON A PATHWAY TOWARDS SELF-ACCEPTANCE, WHICH I DEFINE AS ‘THE ABILITY TO ACCEPT ONESELF WHOLEHEARTEDLY, FOR WHO YOU ARE, DESPITE THE THOUGHTS OR JUDGEMENTS OF OTHERS.’ I HAVE A LONG WAY TO GO AND DEFINITELY BELIEVE THAT IF I’D KNOWN ABOUT MY DIAGNOSIS AS A CHILD, I WOULD HAVE ALREADY REACHED A PLACE OF COMPLETE SELF-ACCEPTANCE. !$
allowed to take up such an important work experience placement if I’d been known to be on the autism spectrum? In university, the number of friends I had continued to drop while I received several awards for consistently high marks during my Bachelor of Early Childhood Education (Honours) and Master of Special Education – Deaf/Hard of Hearing (Distinction). I am proud of these achievements, but they are certainly not the ‘be all and end all’ and I do wish someone had told me there were more important things in life. However, they are very useful in demonstrating the result of the path I took to get to that point. A path full of opportunities I don’t believe I would’ve had if my teachers had seen autism instead of skills.
IT WAS AS AN ADULT THAT I RECEIVED MY AUTISM DIAGNOSIS WITH THE PSYCHOLOGIST WHO ASSESSED ME ASKING HOW ON EARTH I WASN’T DIAGNOSED AS A CHILD.
My diagnosis was my first step along the path to self-acceptance. I explain the steps in this path as: diagnosis, Autistic connections, positive Autistic identity, positive self-identity, self-advocacy, looking after own needs, acceptance from others and finally, belief in acceptance from others. I still have a long way to go. Creating Autistic connections is something you as a parent can do for your child. Reach out to Autisticled organisations to assist with your understanding and to provide validation for your child. Yellow Ladybugs (which I’m an ambassador for) and The I CAN Network are two great places to start. As one Autistic person’s experience is not necessarily going to relate to your child/family, listening to several different voices from the Autistic community will likely be the most beneficial. For several years now, I have been speaking professionally at a national and international level, running professional development for educators and workshops for parents, and receiving wonderful opportunities such as contributing to a resource created by Yellow Ladybugs and the Victorian Education Department called ‘Spotlight on Girls with Autism’. In my ‘spare time’ I enjoy directing my adult community choir. In 2011, I built my own organisation from the ground up – Personalised Approaches, through which I have offered services in private/group education and therapy programs, educational consultancy and health. These pursuits have certainly come with challenges – many quite severe and many of which confirm that the use of functioning labels for autism are irrelevant and completely inaccurate. One of the best ways to overcome any challenges your children may face is to utilise their strengths and interests. This is always the approach I have taken as a professional when working with children on the autism spectrum, and it has always proven to be the most effective. I do believe that my own neurodiversity enabled me to be a better therapist and I have tried to utilise that as a strength. Now the purpose of this article is not to celebrate MY achievements specifically. But, if you walk away after reading this with the concept of achievement, in general, for people on the autism spectrum, and for anyone with a disability, then this article has served its purpose. My ideal world would be where individuals on the autism spectrum are first loved, accepted and respected for who they are AND be given every opportunity that is given to their non-spectrum peers. Were the educational opportunities of leadership, public speaking, planning/organisation that I had an advantage, and did they contribute to where I am today? Absolutely. But the experience I had of posing as a mainstream child, teenager and student, was not an advantage. The older I became, the more ‘different’ I felt. As an older child and teenager, I knew I didn’t fit in and I knew I was ‘different’, but I didn’t know or understand why. This not knowing made me feel even more isolated and developed into a feeling of ‘there’s something wrong with me.’ Therefore, having known my diagnosis as a child and having the chance to grow up with a positive Autistic-identity and more
importantly true self-identity, would have made a world of difference. It would have likely avoided or minimised the mental health challenges I've had as a teenager and into adulthood. It also would have enabled me to become a stronger self-advocate (something I’m just learning to do) and to use positive experiences of self-advocacy to contribute to good mental health. I wish that I had a chance to do it all over again, to turn back the clock to when my mum took me to be evaluated and have her walk out of there being told “Your child is on the autism spectrum”. To go through kinder, school and university with everyone knowing my diagnosis. I wish I could go back, do it all again and prove that I could receive the same praise, the same awards, and get to where I am today, with everyone aware that I am on the autism spectrum. With my repetitive and self-stimulatory behaviours, quirks and everything else that is autism, out in the open. But sadly, I’m not convinced that I would have. Even though I know that I would’ve been capable of those achievements, I don’t believe that I would’ve received the same praise, awards or opportunities or got to where I am today, because of how others would have viewed me and treated me. But maybe I would have been a more confident adult with greater skills in self-advocacy and self-care. You have the potential to be the change-makers. You can go back to your families and into the community and spread this message. Validate autism, validate Autistic identity, but please don’t just see a person’s autism and nothing else. No matter what your child’s diagnosis is or what their level of support is (according to the diagnostic criteria), do not allow anyone to take away opportunities because they don’t think your child is capable. Do not allow others to put limits on your childs potential to achieve and do not allow others to see behaviours that they may not understand, as ‘autistic’ behaviours that need to be stopped or changed. Help people to find the positive slants and use everything they see to support your child to be the person they want and need to be. I’d like to conclude by quoting some lines from Josh Groban’s song ‘Granted’: “The story’s yours, go write it. Tomorrow’s undecided” and “If you have a dream, go chase it.” My dream is to get to the end of my path towards self-acceptance. I never (previously) liked the term ‘Autistic’ to identify myself, because there are millions of ‘Autistic’ people in the world and I’m not the same as anyone else. Two years ago, I said that if anyone asked me if I was Autistic, I would probably reply ‘No, I’m Ebony.’ But then again there are probably thousands of people named Ebony in the world too. Some people spend their whole lives being just Autistic because nobody bothers to see anything else. I’ve spent most of my life being just Ebony. Neither is preferable and neither is good enough. I’m not just Autistic and I’m not just Ebony – I’m ME and like me, your children can be anything they want to be. Ebony Birch-Hanger Special Education Teacher, Teacher of the Deaf, Speaker, Neurodevelopmental Therapist, Education Consultant, Music Specialist. Follow on Facebook: 'Ebony Birch-Hanger - Speaker' for details of all parent and educator workshops. Broad workshop topics include: Autism, Auditory Processing, Neurological Differences, Music for Brain Development, Individual Learning Plans and Anxiety. www.ebonybirchhanger.com firstname.lastname@example.org www.sourcekids.com.au
BY AMRITA DAS
Parenting a child with an invisible disability
I AM A PARENT OF TWO CHILDREN WITH INVISIBLE DISABILITIES – OR “INVISABILITIES” AS WE LOVINGLY LIKE TO CALL THEM IN OUR FAMILY. Since we started our journey over two years ago now, my goal has been to leave behind a world where kids are accepted for who they really are. But I have found that when I try to raise awareness about their diagnosis, I am usually met with comments such as “but he looks so normal” and “she will be perfectly fine”.
disabilities has been inspiring but also isolating. The judgment we receive has often been harder to handle than the diagnoses themselves. And I know we’re not alone. I have talked to many other parents and carers who have had similar experiences, even with their closest family and friends. Here are some of the ways I cope with the challenges we face:
It leaves me wondering – what is normal? What is perfect?
Strangers often become experts in disabilities when they learn your child has one. Everyone has an opinion on what a particular disability should look like.
Coming to terms with the children’s invisible
When people see my little boy, they often say that
he doesn’t look as bad as what I’ve apparently led them to believe, so he can’t possibly have cerebral palsy. Maybe they have a preconceived idea of what cerebral palsy should look like. Maybe they think someone who needs weekly therapy should not be able to walk or talk. Maybe they would feel the label only applies if he was using a walker or wheelchair. When people see my little girl, they often say she is empathetic and making eye contact, so she can’t possibly have autism spectrum disorder. Maybe they don’t realise they are projecting stereotypes of autism onto her. Maybe they think if someone can cope in public then they have no hidden needs. Maybe they feel the label only applies if she was non-verbal or visibly stimming. www.sourcekids.com.au
REMEMBER THAT YOU MIGHT SEE MY KIDS ONCE A DAY, WEEK, MONTH OR YEAR. WHAT YOU SEE IS NEVER THE FULL PICTURE. EVERY INVISABILITY IS UNIQUE. SIMPLY ASK QUESTIONS AND LISTEN WITH AN OPEN HEART.
months. I wasn’t shocked; it was validating and we could finally get him the help he needed. Thanks to early diagnosis and intervention, he has made such progress. I rave about early diagnosis and intervention to anyone who will listen because it’s changed my son’s life for the better. In contrast, being denied early intervention due to a lack of a diagnosed disorder has probably changed my daughter’s life for the worse because we couldn’t understand what was happening for so long.
The reality is, there is a person behind that diagnosis and therefore there can be no expectations about how they express their invisibility. Instead of expecting my children to conform to some unspoken standard or label, I now focus on helping others adjust their views.
ASK, AND ANSWER, MANY QUESTIONS
SEE STRENGTHS WHERE OTHERS SEE WEAKNESS
You might see my son wearing his orthotics, struggling to step or jump or eat like all the kids around him. You might see my daughter covering her ears and crying at the shops, hiding her face in my lap or melting down. We know you see us because it’s hard to miss. Don’t be afraid to look, give us a sympathetic smile or even ask questions. But when you get an answer, please don’t start an endless argument, or dismiss us with laughter or silence. We don’t need advice, just trust.
When you’re constantly told “everything is fine” and that “your child will be alright” it feels like there’s an assumption being made that my children’s lives cannot be “alright” if they have a diagnosed disability. That their lives will somehow be “less”. In reality, all their diagnosis really means is that they have different abilities and strengths – which, let’s face it, we all do. By focusing on strengths, my husband and I have become more forgiving, understanding, vulnerable and aware. Are we not then better role models for our children who have already started realising they are “different” but aren’t afraid of it? Isn’t it amazing that my children are accepting because they are surrounded by true diversity every day? No matter what anyone says, we see all the benefits of their diagnosis and hope that our kids will grow up loving themselves.
When we are ignored, that is when we feel at our most invisible. When we constantly have to prove our child has a disability, that is when we feel the most hurt.
We need this trust from medical professionals too. Parental intuition can sometimes pick up subtle signs that only a mother, father or carer can see. Take my son for example. He had every risk factor for cerebral palsy – very low birth weight, maternal infection while pregnant, premature birth. When we almost lost him at 23 weeks, the first question we were asked was if we wanted to keep a child who was very likely to have cerebral palsy. Yet having him diagnosed turned out to be quite a battle. Multiple physiotherapists did assessments that finally confirmed he had cerebral palsy at 6
There is no denying that the lead up to a diagnosis, and the day it is confirmed, is surreal and heartbreaking. At the start, I felt like I was drowning in uncertainty, therapies, funding, meetings, appointments, tests, surgery and trying to decide which child needed our attention the most. But now, I am growing to accept that this is just part of our life and that it is helping my children reach their goals.
STAND YOUR GROUND Internalising an invisible disability can have a huge impact on your mental health. Being told you’re undeserving of help because you’re not visibly affected or visibly affected “enough” is difficult to deal with too. Sometimes you may be accused of exaggerating, attention seeking or just being a terrible parent for unnecessarily labelling your child with a disability. Possibly the worst thing I’ve heard is that parents are lying to get their children diagnosed. I’m not sure what these people think a family gains by having a child with a disability. Yes, you might be lucky enough to get a little funding but that doesn’t cover anything but necessary therapy or equipment – and sometimes not even that. Remember that you might see my kids once a day, week, month or year. What you see is never the full picture. Every invisability is unique. Simply ask questions and listen with an open heart. Join us in celebrating invisabilities on our Instagram page @invis.abilities or Facebook page @invis.abilities.au ISSUE 23
As market leaders in special needs equipment in Australia, Astris PME 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. Our team is committed to researching new products and global innovation, to find the most technologically advanced equipment that help promote independent, active lifestyles. And we work with leading international manufacturers supplying some of the world’s best products, which means we can provide bespoke solutions which are just as unique as our valued clients.
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With a sense of security, calm and a heap of fun – Body Socks offer a unique proprioceptive and deep pressure experience. Utilise them by incorporating fun games whilst your child wears the body sock, or just chill out within the safe space it provides! To check out their full range go to www.bodysocks.com.au
Have you heard about Kaiko Fidgets? A family-owned and run business founded by Kai, a 13-year-old boy on the spectrum and his mother Jo, an occupational therapist. What started as a hobby for Kai to originally overcome his own struggles with anxiety soon become a booming business assisting many of his school peers and local community members. So, if you’re looking for cool, discreet and robust sensory tools suitable for all ages check out their best sellers “the works kit” plus more in their extensive range at www.kaikofidgets.com.au
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WORKS KIT RRP $69.95
WEIGHTED BLANKETS Wendy’s Weighted Blankets are the perfect accessory to any sensory collection. Ranging from Sensory Fidget Lap Pads to Sensory Weighted Blankets, all quality products are handmade in Australia. To discover Wendy’s range, head to www.wendysweightedblankets.com RRP FROM $100.00
Mindfulness, yoga and meditation Healthy screen time for 21st century kids! More than a million kids do yoga, mindfulness and relaxation with Jaime on the Cosmic Kids YouTube Channel. Some schools are even seeing the benefits of introducing yoga into the school day! www.cosmickids.com RRP FREE
Finally a place you never have to say you’re sorry Our Sensory Play Gyms are open-to-the-public facilities for kids of all abilities. • Holiday Programs • Respite • Classes & Groups • Parties • Therapy • NDIS Registered • Sensory Beneficial Fun
SENSORY CLOTHING Studies have shown that sensory compression to help regulate emotions makes a positive impact for children and adults alike. JettProof garments provide the perfect dose of sensory input to help calm, soothe and support self-regulation. They aid in filtering sensory information to improve the ability to listen and learn. www.jettproof.com.au
PROTAC SENSIT Protac SenSit is a sensory-stimulating chair that provides a sense of security and calm and increased levels of concentration among users. The chair is filled with balls in the seat and back and in the special neck and side wings. These wings can be placed around the body for a secure and calming effect. www.avantinnovations.com.au RRP $ POA
HOPSCOTCH PAD – LIGHT UP TILES Stunning interactive light up tiles! Each time a coloured square on the Hopscotch Pad is pressed, a corresponding colour square illuminates on the wall. Enjoy your own collection of musical sounds by loading them through the USB Interface from your computer.
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SOCIAL STORIES – APPS – I CREATE SOCIAL SKILLS STORIES
FUNKY MONKEY BARS Sometimes we just need to monkey around to get all our frustrations out! And what better way than a backyard Funky Monkey Bars set? Check out their brilliant range at www.funkymonkeybars.com RRP FROM $990.00
DRUMS What better way to get rhythmic and beat the blues than by drumming! Drumming has been found to have therapeutic benefits such as reducing tension, anxiety and stress; it boosts the immune system and releases negative feelings and emotional trauma. Check out the What’s On at your local library as many libraries now offer drumming as an activity!
There is a vast collection of social stories apps out there, it’s hard to pinpoint just one! Social stories allow you to create a story particular to your child’s needs and understanding. For example, it might be a social story about attending an event for the first time – like a birthday party. You can create the social story to let your child know in advance, what they may encounter and expect, to help with their regulation. RRP $7.99 apps.apple.com/au/app/i-create-socialskills-stories/id513666306
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Unique, fun and practical products to improve the lives of children with disability
Children’s Disability Products is Australia’s newest online store featuring quality products to improve the lives of children with special needs. CDP aims to source and bring you the most unique, fun and practical products that are either not available in Australia yet, are scarce to find or are simply just amazing products. CDP has been created by parents of children with special needs and every product is hand selected as a product that will help children living with a disability achieve daily tasks in their lives or improve their skills and help them reach their full potential. Stockists of Eazyhold, EZPZ….and more!
Sensory ssolutions olutions Sensory work,, home for work & school My Story
maDe for you… by me! My name is Kai & I started making my own fidgets when I was 11 because I couldn’t find anything that wasn’t noisy or embarrassing! Mine are SUPER COOL & mainly made of metal. They are not just for kids like me, adults love them too! Using my fidgets has really helped me with my anxiety & also to concentrate at school. It feels good knowing that my fidgets are helping others! My mum (who’s an Occupational Therapist) has now helped me design & make more than 20 different fidgets. They have a huge range of uses for people with all different kinds of sensory needs. As well as my fidgets, I sell lots of other amazing sensory products on my website. I enjoy using them & I hope you will too. Please follow my journey
Visit me at...
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6 SOURCE KIDS
BY KYLIE MARTIN
ACTIVITIES FOR THE EASTER HOLIDAYS
TO BOOST YOUR CHILD’S LITERACY SKILLS
THE EASTER HOLIDAYS TYPICALLY SIGNAL THE END OF TERM ONE FOR STUDENTS ACROSS AUSTRALIA. MANY PARENTS, ESPECIALLY PARENTS OF PREPPIES HAVE BATTLED THEIR NERVES AND ATTENDED THEIR FIRST PARENT/ TEACHER INTERVIEW. AND THE REPORT CARD SAYS... FOR A LARGE NUMBER OF CHILDREN EARLY LITERACY SKILLS ARE NOT AT THE LEVEL NECESSARY TO SUPPORT THE EASY ACQUISITION OF READING AND SPELLING. According to the Australian Bureau of Statistics almost 50 per cent of adults do not have literacy skills at a level high enough to cope with occupational reading and writing demands and "reading for pleasure may not be possible" (abs.gov.au).
While we "teach" children to read when they start school, literacy learning starts from birth. Many of the foundational skills develop before a child is 4 years old. Focussing on these early skills can give your child a head-start when it comes to literacy and can also be helpful to revisit if reading and spelling is a bit tricky.
EXPLORE SOUNDS Helping children think about sounds is a great way to help them build up the capacity to remember sounds, recognise sound patterns, and hold sounds in their working memory. Using the letters of the alphabet, talk about the sound each letter makes and then talk about the sound. Is it a long sound or a short sound? Is it a loud sound or a soft sound? How do we use our mouth to make the sound? Do we use our lips? Our tongue? Our teeth? How are sounds similar? How are they different.
ACCENTUATE THE SYLLABLES
Breaking words into syllables and learning syllable patterns is an important skill for children to learn so they can attack and work out big words instead of skipping over them or guessing. Syllable activities are heaps of fun. First of all, google a list of 2, 3 and 4 syllable words then get out your pans and wooden spoons and bang out the beats. You could draw a hopscotch on your driveway with chalk and see how many words it takes to get to the end (1 syllable = 1 hop). Syllable tag is a fun game for the car. Pick a word and tell everyone the word then take turns to say one syllable each until the word is finished.
SING SING SING Many parents report that their children who have trouble with reading and spelling also had trouble learning the words of nursery rhymes and songs at a young age. Singing these songs over and over help children become aware of rhythm which helps with reading fluency and rhyme an essential skill for learning spelling patterns. Why not try singing the first line, and the start of the next but stop and allow your child to finish the rhyme e.g. hickory dickory dock, the mouse ran up the.......(clock)
TAKE OFF Helping children discover that big words are often made up of little words joined together can help to build up their confidence to have a go at working out big words. Compound words are perfect for take-off activities. Make a list of compound words. Write one word at the top of a page (e.g. cupcake) and draw a picture ). Then ask what would for each part ( cupcake be if we take away cup? What would cupcake be if we took away cake?
EAT YOUR WORDS Why not use carrot sticks or beans or grated cheese or sultanas to make letters? Write the letters on paper and lie the food on top or make the letter next to the written example using it as a guide only. Start with the letters in your child's name. Name the letter and make its sound as you go. When the letters are made, give your child an instruction "Eat the /k/, have two bites of your /s/.
READ This sounds like an obvious suggestion, but research shows that reading to your child is one of the most powerful ways to help your child build a solid foundation for their own reading and writing journey. Try pointing to the words as you read them to help your child build up an awareness of text and word/text relationships and for simple stories your child is familiar with, see if they can point to the text as you read. The weather is getting cooler so why not snuggle up together these holidays and trying some of these strategies – enjoy!! Kylie Martin is a speech pathologist at Chatter-boxes Speech Pathology Services. For advice or information on speech and language development, play, feeding or social communication visit www.chatter-boxes.com.au
in the kitchen!
CUTE AND SIMPLE EASTER-THEMED CREATIONS THAT THE KIDS WILL LOVE TO HELP MAKE AND (HOPEFULLY!) EAT.
Pizza rounds can easily look like bunnies with a couple of ear shaped pieces of pizza dough tagged on to the top! Let you child choose the toppings and get sprinkling for some more fine motor fun.
Bunny Cupcakes You can use boxed cake mix and premade icing to speed up these cute cupcakes. Popping the eyes, nose and ears onto the cakes is a great fine motor activity. INGREDIENTS: White cake mix (plus other ingredients shown on box) Vanilla icing Pink sprinkles Pink smarties Mini chocolate chips Marshmallows METHOD: Make the cupcakes and when cool spread a good layer of icing on top. Give each bunny a pink smartie nose and chocolate chip eyes. For the ears, cut the marshmallows diagonally (a job for the adults) and dip the sticky side into your pink sprinkles to make the insides of the ears. Voila – bunny cakes!
Easter Bunny Tails You can turn ordinary white marshmallows into fluffy ‘tails’ with just a couple of extra ingredients. INGREDIENTS: 1 cup desiccated coconut 1 or 2 packets of marshmallows Packet of white chocolate melts METHOD: Empty the coconut into a bowl or a onto a plate. Place the white chocolate melts into a non-metallic, heat-proof bowl and melt over simmering water, stirring occasionally. Remove from the heat. Using a fork, dip individual marshmallows into the melted chocolate so that they’re lightly coated. Next, transfer them to the coconut and gently toss to coat. Place on a lined baking tray and leave until the chocolate has set.
Springtime Popcorn A fun mix of chocolate melts, sprinkles and popcorn for a pretty, pastel Easter treat! INGREDIENTS 1 large packet of popcorn White chocolate candy melts (for the main covering) Various colours of candy melts (for drizzling) Sprinkles M&Ms Any other topping you like! METHOD: Empty the popcorn into a bowl and set aside. Place the white chocolate melts into a non-metallic, heat-proof bowl and melt over simmering water, stirring occasionally. Or you can melt using a microwave.
Instead of cookies, if you have a rabbitshaped cutter you could put it to use to make an Easter-themed lunch plate
Pour the melted white chocolate over the popcorn and stir to coat thoroughly. Spread onto a baking tray lined with greaseproof paper and set aside to cool.
Just choose your child’s favourite fillings for your bread shaped bunnies or you could go open style like in the photo on the left! Get creative with shredded carrot, cucumber, other veggies and little cheese shapes to give your bunny something to sit on.
Use your preferred method to melt each of the different coloured candy melts and drizzle each colour over the popcorn. Top with your other toppings and leave to cool completely. Once cooled, break into pieces and enjoy!
m u myanm d me
Celebrâ€™ating Mother s Day with you!
Laura and Luca Belinda and Zoe , QLD
Tracey Tara and
Selena and Roxie, QLD
Mechelle, Owen and Callum
Debbie and Jacinta, SA
Poonam and her
Kelly and Maddison, VIC
Julie and Darcy, VIC
Gayleen and Terry
Shelley & Estelle
Melinda and Cooper, NS
Michelle, David, Kristop Maddisyn, Tilly, Louie , her, Lilly and Oliver, VIC
Ena and Dallas, QLD
Linda and Harrison, QLD Clare , Alice and George
Kylie and Harvey, QLD Heather and Lucy, QLD
Kelly and Zoe, VIC
Sarah, Sonny and Imogen, NSW
Bobbi-Jo, Darci , Rachel and April , WA
m u myanm d me ISSUE 23
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MOTOR SKILLS COORDINATION
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FEEDING AND SWALLOW THERAPY At Elite Speech Therapy Services, we know feeding! We assess and treat children of all ages who struggle with eating and drinking in ways that negatively impact their physical or emotional health, cause stress at mealtimes, or that lead to dependence on tube feedings. We work to understand your child’s unique feeding problems and provide targeted treatment that leads to meaningful changes. Our individualised feeding programs utilise state of the art technology, including VitalStim therapy to help your child succeed.
WHAT IS VITALSTIM THERAPY? VitalStim is a form of neuromuscular electrical stimulation (NMES) designed specifically for the safe and effective treatment of dysphagia. VitalStim works by administering small, electrical impulses to the swallowing muscles in the throat through electrodes attached to the skin overlaying the musculature. VitalStim is the only technology approved by the Food and Drug Administration in America for restoring swallowing function in individuals with
oropharyngeal dysphagia. VitalStim has been well researched proving effective and lasting effects following treatment. Results of this therapy involve increased muscle strength, improved swallow function, accelerated cortical reorganisation, and increased effectiveness of exercise therapy. At Elite Speech Therapy Services our feeding therapy programs are tailored to your child’s specific needs. We address a range of dysphagia symptoms including sucking, swallowing, drinking, chewing, eating, lip closure, tongue movement, jaw stability, controlling saliva, and protecting the lungs from food/liquid. Our speech therapists are highly trained and experienced in the implementation of VitalStim therapy in conjunction with traditional feeding therapies to maximize your child’s progress.
WHO MAY BENEFIT FROM FEEDING AND SWALLOW THERAPY • Children of all ages as oral motor dysfunction and dysphagia can occur from the time of birth and can affect individuals across the lifespan. For children and babies, this could mean not getting enough nutrients to support growth and brain development
• A child who has oral/pharyngeal dysphagia • A child who may be tube-dependent for all nutrition • Children with cerebral palsy, cleft lip and palate, stroke, traumatic brain injury, spinal muscular atrophy, Down syndrome, PraderWilli syndrome, failure to thrive, children with abnormalities in the structures of the head, neck, and face such as cleft lip or palate, and more
SIGNS OF SWALLOWING/ FEEDING DISORDER • Refusing to eat • Frequent coughing or throat clearing during or soon after eating/drinking • Excessive drooling • Refusing to eat certain textures of food • Spitting up or vomiting after eating/drinking • A “wet” or “gurgly” sounding vocal quality after eating/drinking Elite Speech Therapy Services feeding programs range from weekly therapy sessions to intensive therapy programs consisting of blocks of up to 15 hours of therapy. All therapy sessions are conducted by one of our Elite speech therapists. Call us today to speak to one of our therapists about what Elite Speech Therapy can do for your child.
Phone: 0420 695 806 Email: firstname.lastname@example.org 306/10 Tilley Lane, Frenchs Forest, NSW 2086
PDA PERSPECTIVES: Exploring Demand Avoidance And Anxiety in Autism An all day conference with experts from Australia and the UK MELBOURNE
Saturday 23 May 2020
Sunday 24 May 2020
Wednesday 27 May 2020
Saturday 30 May 2020 Tuesday 2 June 2020 and Wednesday 3 June 2020
CAIRNS BRISBANE SYDNEY NEWCASTLE
Does your child experience high levels of anxiety? Does your child resist everyday demands such as getting dressed, going to school or eating a meal? Is your child autistic or displays signs of autism? If so, you may benefit from learning more about PDA.
Sunday 7 June 2020 Tuesday 9 June 2020 Saturday 13 June 2020 Sunday 14 June 2020
Thursday 18 June 2020
Saturday 20 June 2020
Source Kids readers can access a 10% discount on tickets by using the codeword sourcekids when booking. For more information and to book, visit: www.hoopdeedo.com.au
Pathological Demand Avoidance or PDA is a condition that is considered part of the Autism Spectrum by the National Autistic Society in the UK and is becoming increasingly recognised in Australia. It is characterised by extremely high levels of anxiety which lead to a child constantly trying to keep themselves safe by controlling their environment, resulting in avoidance of everyday demands, difficulties regulating their emotions, and often challenging behaviour. Join PDA experts Harry Thompson (UK PDAer and author of ‘The PDA Paradox’), and Kristy Forbes (PDAer, Educator and owner of Intune Pathways), and Child Psychologist Raelene Dundon (author of ‘The Parents’ Guide to Managing Anxiety in Children with Autism’) for a day sharing insights and knowledge about how Autism, anxiety and demand avoidance impact on the lives of children, adults and families, and what we can do to support individuals with PDA.
INTRODUCING OUR AMBASSADORS We had such a great response to our first Source Kids Ambassador search and we’re thrilled to be able to introduce you to the winners – our very first set of fantastic young people who you’ll be hearing a lot more from in the coming months. Over the next few pages we’ll let them introduce themselves in a mix of their own words and words from their parents…
TELL US A BIT ABOUT YOUR FAMILY, WHO ARE YOU ALL?
I’m the eldest of four kids in an active family who are always on the go. My brother Chase is fifteen and a year below me at high school (we can be supercompetitive). My sister Paige is eleven and enjoys music, dance, soccer and singing. Also, in April my family will be waiting for the arrival of our new baby sister. We all live with my incredible mum and dad, Casey and Clint and my dog, Tiny, who is a chihuahua and thinks she is the size of a lion.
WHERE DO YOU LIVE In the beachside town of Corindi on the Mid North Coast in New South Wales.
WHAT IS YOUR DIAGNOSIS? HOW DOES IT CHALLENGE YOU AND HOW DO YOU OVERCOME THESE CHALLENGES? I have cerebral palsy. I have overcome issues of access and participation from my physical abilities by changing the environment around me and finding alternate solutions which also benefit others. Examples of this are learning to control my wheelchair through using a switch in order to move independently and using technology to access school lessons and communicate.
WHAT THINGS DO YOU LOVE TO DO AS A FAMILY? Our family has always enjoyed spending time doing activities that we all can participate in, like going to the movies, bowling or having fun at the local skate park. Now, with the development of Polyspine (which I am a co-founder, along with my dad) our range of activities has extended. Polyspine enables me to be alongside my family to participate in new activities such as paddle-boarding, swimming and go-karting which we all enjoy. We also love to explore different holiday destinations. Most recently was our family holiday to Brisbane where we spent a week over the New Year period. We really enjoyed the fireworks, the weather, the local hospitality and the Wheel of Brisbane was a fantastic experience for all of us. On our 2nd week of the holiday we travelled to my favourite part of Australia, which I call my 2nd home, Sydney. I often travel to Sydney for work and for my health care needs, but this time it was nice to play tourist.
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KAI SEYMON VIC
TELL US A BIT ABOUT YOUR FAMILY, WHO ARE YOU ALL? I live with my mum and dad, brother Kobi and we also have 2 cats, goldfish and a puppy – Princess, my therapy dog. We live in Tarniet, VIC – next door to my nana and poppy as well as my cousins which is cool.
WHAT IS YOUR DIAGNOSIS AND HOW DOES IT CHALLENGE YOU? I am dyslexic and autistic. I have trouble reading and writing. I also like to follow rules and that can make friendships tricky. I am hyper-focused on my interests and find noisy spaces and lots of people really hard. I also struggle with a lot of different foods as I have a sensory palette
HOW DO YOU OVERCOME THESE CHALLENGES? I use a computer to help me with school work and I have an awesome psychologist that helps me cope with social challenges. My mum is great at supporting my limited food preferences.
WHAT SORT OF THINGS DO YOU LOVE TO DO AS A FAMILY? We love to go to markets with our products, we love having people over to our house and playing board games.
TELL US ABOUT YOUR INTEREST AND PASSIONS I love to make gundam models, draw, make Lego, and play basketball. In 2017, when I was 11, I started making my own fidgets because I couldn’t find anything that wasn’t noisy or embarrassing! Using my fidgets has really helped me with my anxiety & also to concentrate at school. It feels so good knowing that my fidgets are helping others! My mum (who’s an Occupational Therapist) has now helped me design & make more than 20 different fidgets. They have a huge range of uses for people with all different kinds of sensory needs. As well as my fidgets, I sell lots of other amazing sensory products on my website. My business is called Kaiko Fidgets.
DO YOU HAVE ANY BIG GOALS FOR THIS YEAR? To sell my products internationally.
WHY ARE YOU EXCITED TO BE A SOURCE KIDS AMBASSADOR? So I can help kids like myself that have similar challenges. It will be fun to be at the expo to meet people too, but I do sometimes find big crowds and noises hard.
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TELL US A BIT ABOUT YOUR FAMILY, WHO ARE YOU ALL AND WHERE DO YOU LIVE? Finley (aka Fin) is 12 years old and lives with his younger brother Matao, who is 10 and his mum, Amanda and dad, Jason. Jason works away for 2 weeks and is home for 2 weeks and Amanda is a kids yoga teacher and teaches at Meridan State College where both Fin and Matao attend school. Fin has just started his first year in high school. We live just down the road from the school so Fin is able to get himself to and from school independently in his power wheelchair. We live on the Sunshine Coast, QLD
WHAT IS YOUR CHILD’S DIAGNOSIS? TELL US HOW IT CHALLENGES/AFFECTS THEM AND HOW THEY OVERCOME THESE CHALLENGES Fin’s diagnosis is dystonic quadriplegic cerebral palsy. This means Fin’s whole body is affected. Fin overcomes his challenges with amazing assistive technology and a determined attitude and a whole team of therapists and assistance. He is unable to talk so he uses a communication device that he has named Bob (like the Minions). He attends weekly speech therapy sessions. He is unable to walk or stand on his own and for that he has multiple pieces of tech. He has a power wheelchair which he uses at school and in the home. He has a walking frame which he has just started to be able to use again after a successful calf lengthening operation last year which has enabled him to be back on his feet. He has a Meerkat standing frame which he loves to use for things like cooking. He can stand and reach the stove top and flip the burgers which he is unable to do in his chair. Fin attends weekly physiotherapy sessions and has a physio routine that he completes daily. He is amazingly motivated with this and completes it first thing in the morning every day. He requires assistance with all daily activities such as feeding, dressing and toileting and he regularly sees an OT for this to set goals around improving his independence.
WHAT SORT OF THINGS DO YOU LOVE TO DO AS A FAMILY? Being on the Sunshine Coast we spend a lot of time in and around the water. We have a pool that is used daily in summer and we love to go to the beach with our friends and family. We have recently started kayaking because we were trying to find a way to get into the beautiful forests and waterways around the coast in an accessible way. Most bush walks have stairs and it’s just not possible for us to access them. We weren’t even sure if Fin would be able to sit in a kayak but to our absolute delight he felt comfortable and safe. We also love to go bike riding and we have a bike that Fin can ride on independently for short distances and a buggy that is pulled behind a bike for longer rides. We also love to travel and go on adventures.
TELL US ABOUT YOUR CHILD’S INTEREST AND PASSIONS Fin loves all things technology! He recently built his own desktop computer and loves to keep up to date with all the latest reports on what’s new in the tech world. Fin also plays Boccia and is hoping to compete at the Nationals in Tasmania this year.
DO YOU HAVE ANY BIG GOALS FOR THIS YEAR? A lot of Fin’s goals this year are about becoming more independent. He would like to improve his literacy skills which is something he has found challenging and he would like to read independently. He wants to improve upon his Boccia skills and compete in his first Boccia competition.
WHY ARE YOU EXCITED TO BE A SOURCE KIDS AMBASSADOR? I am very excited to share one year of my life with Source Kids and I hope that when people see all the amazing things I can do they will think… “I can do it too”.
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TELL US A BIT ABOUT YOUR FAMILY, WHO ARE YOU ALL AND WHERE DO YOU LIVE? My family is, my mum and dad, Toni and Trent Saul. I have 3 siblings, Kiarna who is 14 and loves roller skating, Thomas who is 12 and plays rugby league and rep oztag, then there is me Brydi 9, and my little brother Lockie who is 4 who loves playing with his cars and building obstacle courses. We live in in Inala in Brisbane, QLD.
WHAT IS YOUR CHILD’S DIAGNOSIS? TELL US HOW IT CHALLENGES/AFFECTS THEM AND HOW THEY OVERCOME THESE CHALLENGES Brydi was born a paraplegic due to a large spinal hemangioma (tumour) in T11-L4, which was removed with major spinal surgery when she was 3 days old. This means that Brydi has no use of her legs and also has a neurogenic bladder and bowel. Brydi relies on a wheelchair to get around but she does not let that wheelchair define who she is. She simply calls it her legs. As she doesn’t know any different, she embraces her chair and instead of being sad she pushes limits. She goes to the local skate park just like all the kids and rolls around all the obstacles just like a skateboarder but in her chair. She participates and excels in sports as a way to not only stay healthy and chase her dreams but also show other kids that she can be just like everyone else. Brydi has suffered from bullying and went through a period of distress when she started school. She was bullied because she still wore nappies and for being in a chair. This led to Brydi being suicidal. With the help of ICANIWILL children’s charity she learnt to be strong, confident and show the bullies that their words don’t affect her anymore. She now excels in sport and has huge amounts of confidence as well as the tools to continue to overcome adversity and challenges in her life.
WHAT SORT OF THINGS DO YOU LOVE TO DO AS A FAMILY? As a family we love to go camping, play sports, watch movies and find new places to eat out. We all love sport whether it be playing or supporting, and our weekends are always filled with adventures. We all are involved in charity work also and love to give our time helping others.
TELL US ABOUT YOUR CHILD’S INTEREST AND PASSIONS Brydi is passionate about wheelchair racing and wheelchair sports. She has a big goal to one day be in the Paralympics, like Paris in 2024, and trains multiple times a week to reach that goal. Brydi is passionate about helping others and is a proud ambassador for ICANIWILL children’s charity that is helping fight bullying and youth suicide. She doesn’t want any other children, disabled or not, to have to go through what she went through. She also supports other charities like Variety Qld, Humpty Dumpty Foundation and The Children’s Hospital Foundation, using her love for sport to compete in things like fun runs, and triathlons to help raise money and awareness.
DO YOU HAVE ANY BIG GOALS FOR THIS YEAR? The big goal for 2020! This year I want to improve my PBs in wheelchair racing and compete, representing my state in athletics. I am excited to do the Humpty Dumpty Balmoral Burn again this year, which is a 400m uphill race with a huge incline! I also want to keep sharing my story, not for fame but for awareness and to inspire other kids and even adults to try something new, or go back to do something they loved and gave up, and to also show other kids who are suffering from bullying to be confident and strong and not let the bullies win. Already this year I have reached a huge goal, in January 2020 I participated in the OZDAY1OK wheelchair race in Sydney at the Rocks. I officially became the youngest competitor to finish the very tough 10km course.
WHY ARE YOU EXCITED TO BE A SOURCE KIDS AMBASSADOR? I am excited to be a Source Kids ambassador as I love the magazine and love that they promote inclusion and is a place for kids with disabilities and their parents to find useful information. I am excited to share my adventures and hope that even one person can see it and be inspired to also do amazing things. To promote that disabilities shouldn’t define us, we should embrace them and show the world that we belong.
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N O S WHAT'
March 21 World Down Syndrome Day www.downsyndrome.org.au
4-5 The Source Kids Disability Expo, Melbourne Convention & Exhibition Centre, VIC
21 WCMX & Adaptive Skate Date, Pizzey Skate Park, Gold Coast, QLD www.facebook.com/aussiewcmx 23 Down Syndrome Victoria Family Fun Day, Ashwood School, Ashwood, VIC www.downsyndromevictoria.org.au 27-29 Down Syndrome Queensland Challenge Weekend, Sunshine Coast Recreation Centre, Currimundi, QLD www.downsyndromeqld.org.au 28 Peter Rabbit Sensory Screening, Dendy Cinemas, Canberra, ACT www.dendy.com.au/events/sensoryfriendly-screening
EXPO MELBOURNE’S MUST ATTEND DISABILITY EXPO FREE ENTRY The Source Kids Disability Expo is coming back to Melbourne! Focused on children, youth and young adults – this expo brings together the latest products, services and technology under one roof. Come along and find, test and talk with providers and have a great family day out. Full details at www.sourcekids.com.au/ disability-expo
28-12 April Maddi & Jimmy and the Brick of Destiny, The Powder Room, Melbourne Town Hall, VIC www.comedyfestival.com.au/2020/shows/ maddy-and-jimmy-and-the-brick-of-destiny 31 Charlie & The Chocolate Factory Audio Described Performance, QPAC, Brisbane, QLD www.qpac.com.au/event/charlie_chocolate_ factory_20/
April 1 Charlie and the War Against Grannies, Auslan interpreted performance, Melbourne Arts Centre, VIC www.artscentremelbourne.com.au/whatson/kids-and-families 2 World Autism Awareness Day www.autismspectrum.org.au
18 WCMX & Adaptive Skate Date, Paddington Skate Park, Brisbane, QLD www.facebook.com/aussiewcmx
4 Charlie and the War Against Grannies, relaxed performance, Melbourne Arts Centre, VIC www.artscentremelbourne.com.au/whatson/kids-and-families 5 Peter Rabbit Sensory Screening, Event Cinemas www.eventcinemas.com.au/ EventsFestivals/SensoryFriendlyScreenings 9 Charlie & The Chocolate Factory Auslan interpreted performance, QPAC, Brisbane, QLD www.qpac.com.au/event/charlie_ chocolate_factory_20/ 11 The Gruffalo’s Child, audio described performance. Sydney Opera House, NSW www.sydneyoperahouse.com/events/ whats-on.html 14 The Gruffalo’s Child, Relaxed performance. Sydney Opera House, NSW www.sydneyoperahouse.com/events/ whats-on.html
21 Charlie and the War Against Grannies, Relaxed performance. Sydney Opera House, NSW www.sydneyoperahouse.com/events/ whats-on.html 24 Charlie and the War Against Grannies, Auslan interpreted performance. Sydney Opera House, NSW www.sydneyoperahouse.com/events/ whats-on.html 25 Onward Sensory Screening, Dendy Cinemas, Canberra, ACT www.dendy.com.au/events/sensoryfriendly-screening 26 Teeny Tiny Stevies, Auslan interpreted performance. Sydney Opera House, NSW www.sydneyoperahouse.com/events/ whats-on.html
MAY 6-7 ATSA Independent Living Expo, Claremont Showground, WA 10 Trolls World Tour Sensory Screening, Event Cinemas www.eventcinemas.com.au/EventsFestivals/ SensoryFriendlyScreenings 10
13-14 ATSA Independent Living Expo, Melbourne Showgrounds, VIC 16 W CMX & Adaptive Skate Date, New Nambour Skate Park, Sunshine Coast, QLD www.facebook.com/aussiewcmx 26-1 June Food Allergy Awareness Week allergyfacts.org.au/faw/ 30 Scoob Sensory Screening, Dendy Cinemas, Canberra, ACT www.dendy.com.au/events/sensoryfriendly-screening
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BY RACHEL WILLIAMS
SDR JOURNEY Four years of research was enough to convince Tara Thompson that the benefits of a risky surgery to alleviate some of her daughter Willow’s cerebral palsy symptoms, far outweighed the possible negative effects. The NSW mother went against the advice of many Australian specialists and flew her daughter Willow to the US for the procedure. The five-year-old is one of a few thousand people with CP across the globe who have sought out a regarded neurosurgeon at St Louis Hospital to undertake Selective dorsal rhizotomy (SDR). The surgery involves opening the back of one or more vertebrae in the lower spine to expose the spinal cord with the neurosurgeon selectively cutting the sensory nerve fibres which send messages from the leg muscles back to the spinal cord to reduce spasticity in the legs. Tara said making the decision to proceed with the operation had been a long and complex process – one that started when Willow was just 18 months old, having been diagnosed with CP at seven months. Willow, who has two sisters – Ava, 7 and Indy, 2 – was born prematurely at 29 weeks due to a placental abruption. Tara and husband Kirk knew from that moment that she had suffered brain damage and would possibly have CP and other disabilities.
The idea of SDR was first floated through social media, when someone with a successful SDR story made contact with Tara.
researching it constantly, began following others on social media that had the operation and the idea kept becoming more appealing.
“Someone approached me on Instagram about SDR. Their child had it and was quite adamant that Willow needed it and that all of the therapy in the world wouldn’t give her the same gains,” Tara says.
“The children that were having it were all so much like Willow with similar abilities and the same diagnosis.
“We were at the beginning stages of working through her diagnosis and the thought of putting her through such an invasive operation that she technically didn’t need wasn’t something I was interested in whatsoever. We did a lot of therapy at home and although progress was slow there was still progress. “SDR was always on my radar though.” During an SDR operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining electromyographic (EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact. According to the St Louis Children’s Hospital, at present, SDR is the only surgical procedure that can provide permanent reduction of spasticity in CP. Willow’s paediatrician and specialist team were quick to dismiss as an option the surgery, which has not been completed many times in Australia. “But I couldn’t get it out of my head. I began
“For the next year or so I would bring it up at appointments to have the idea easily fade again.” Eventually Willow’s doctors agreed she could be a suitable candidate but suggested she wait until she was eight years old to make a definitive decision. Tara thought that would be too late and so began the journey to St Louis. “Dr T.S Parks is a neurosurgeon there and has completed the operation over 4000 times with extremely positive results,” Tara explains. “We were more confident traveling to a doctor that had a wealth of experience and knowledge around it – we were confident that if we were going to do it we needed to go to someone who was well trusted, plus we weren’t about to wait another few years for a probable no from the Australian specialists. “Like all operations there were possible complications – paralysis of the legs and bladder, incompetence, and sensory loss were the most serious complications. But we researched for years and these possible complications were very rare.” Dr Parks confirmed Willow would be an excellent candidate – saying that he would expect to see her spasticity permanently reduced, her sitting
“Willow progressed a lot slower than her older sister and was showing that she was behind in milestones even from an early age,” Tara recalls. “Her right hand was constantly fisted. Willow was quite upset and frustrated often as a baby. She found it difficult to play, sit and crawl and it was actually quite a stressful and daunting time.” Tara became heavily invested in at-home play therapy to complement Willow’s regular professional appointments. The former early childhood educator and primary school teacher develops creative methods to include therapy into day to day life.
and standing postures improve, transitions would be easier and faster and her balance and level of comfort would improve. He also said he expected the surgery would allow Willow to walk independently in all environments – a dream come true for Tara and Kirk. The family fundraised for 18 months to raise $120,000 to pay for the surgery, flights to the US and five weeks of accommodation while Willow recovered and underwent intense physical therapy. Tara says the operation went smoothly. “We were required to come back to the hospital each day for a one-hour physio session to assist Willow in regaining her pre-surgery strength,” she explains. “During this time Willow also underwent a second operation called Percs. This is a muscle lengthening operation and while it required only a one-hour hospital stay, it was a lot more painful for Willow. They say Percs is like the ‘icing on the cake’ for SDR and in Willow’s case, Dr Parks wouldn’t operate unless we said we would also have Percs during our stay. “It was extremely daunting and overwhelming seeing how weak Willow was post-surgery and it was hard not to worry about if we did the wrong thing,” Tara admits. “But every single day she became stronger and we could already see an increase in flexibility and range of motion in those early weeks.”
Tara says that requirements after SDR are very strict. “Willow needed to wear knee splints at night for two months and must wear night foot/ankle orthotics. We must complete home stretching at least twice a day, attend physio five times a week (along with all her other therapy sessions) and continue with a home program. “Leading up to the surgery I was a bit overwhelmed with all of these requirements but Willow has tolerated it all really well.” Willow is now 5 months post-surgery and Tara says she is amazed with the result. She credits her constant at home therapies for achieving such a successful outcome. “I think her body feels different and it’s easier to move, plus she has gained so many new skills so this is very encouraging and motivating for her. “The abilities she now has are what I was hoping to expect at about a year post-surgery. She has made so many gains, is so much stronger, her posture is incredible. “She has endless new skills that she wasn’t able to do prior to SDR but above everything else she is so much happier. “It has made a noticeable difference to her behaviour and mood. Willow also has autism and behaviour was something we all struggled with but the decrease in frustration has helped her in so many positive ways. She is also very much on her way to becoming an independent walker.” An independent future awaits Willow, who,
according to her mum, is an extremely witty and smart child who can talk about anything and everything – “which is ironic considering she started her early years with a speech delay and required a lot of speech therapy”. “My hope is that Willow continues to make gains in her confidence and mobility so that she can live her life as independent and free as she chooses,” Tara says. “We are working on her endurance, so while Willow can take independent steps now she does fatigue. So, keeping up with physio and giving her multiple opportunities throughout the day to continue to build strength will assist in increasing this. “Willow is about to start a three-week intensive therapy program at the NAPA Centre. This requires 2 hours of intense therapy every day for 3 weeks.” Tara is excited to see the improvements Willow will make after the NAPA program and she is confident in recommending other parents of CP children investigate if Willow’s journey could be suitable for them. “I would 100% recommend other families looking into SDR surgery to see if their children are a possible candidate. It is the best decision we have made for Willow to date and I am so glad we went with our gut to look into it further and to travel to see Dr Parks.” To follow Willow’s journey and to access some of Tara’s home therapy tips, visit the website www.willowscpjourney.com.au/
“I WOULD 100% RECOMMEND OTHER FAMILIES LOOKING INTO SDR SURGERY TO SEE IF THEIR CHILDREN ARE A POSSIBLE CANDIDATE. IT IS THE BEST DECISION WE HAVE MADE FOR WILLOW TO DATE AND I AM SO GLAD WE WENT WITH OUR GUT TO LOOK INTO IT FURTHER AND TO TRAVEL TO SEE DR PARKS.”
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BUILDING EMOTIONAL RESILIENCE
ASSOCIATE PROFESSOR HELEN BOURKE-TAYLOR, PHD, MONASH UNIVERSITY
in the face of adversity:
How can parents stay buoyant and calm?
Managing the many responsibilities that go along with parenting a child or children with additional needs takes more than grit and determination. Anyone reading this will know that managing the many additional tasks such as organising medications, attending therapy or navigating the NDIS, is not easy to do. It’s not surprising that parents with a child or children with disabilities report higher stress than other parents. It’s also not surprising that parents report that they learn to manage, enjoy life and build resilience over time. Why do some parents stay buoyant and cope with wave after wave of problems? Why do other parents seem calm when surrounded by turmoil? One factor that appears often in the research literature and a concept that we discuss in daily life, is the concept of resilience.
what is resilience?
Resilience is an elusive concept meaning that there is not a universal definition that people agree upon. Psychologists often view resilience in relation to combating stress and the Cambridge dictionary simply says that resilience is both: “the ability to be happy, successful, etc. again after something difficult or bad has happened”; and “the ability of a substance to return to its usual shape after being bent, stretched, or pressed”. Being resilient isn’t about being Pollyanna and gliding through daily problems with a little skip and a smile. Being resilient is about taking care of yourself so that you can manage the small and large difficulties that present themselves today, tomorrow and the next day. Resilience is also about becoming stronger through good experiences that validate you and learning from mistakes or events that didn’t go so well. In these ways, becoming resilient is a process of growth, validation and successful discovery of yourself as a parent with more to manage than many other parents.
ADVERSE EVENTS THAT CAUSE STRESS VERSUS TRAUMATIC EVENTS CAUSING DISTRESS Resilience is a way of being that enables a person to cope and manage adverse events and the resulting stress. It is really important to make a distinction between stress, or an adverse event, and actual trauma. In research, most studies are looking into how parents experience stress and how parents cope with adversity, resulting from issues such as multiple night waking to care of a child, challenging behaviour in young children, or a lack of a supportive network around the family. While all of these and many more issues are serious if they are happening in your life, they are not the same as traumatic and life altering events. 52
If you are a person who has experienced trauma or is experiencing trauma, daily adverse events can be more difficult to manage. It can be more difficult to build resilience. Certainly, if you are in a situation that is traumatic your safety and your family’s safety is of the utmost importance. Seek help from friends and professionals. It is possible to learn to manage the impact of trauma and indeed to experience personal and psychological growth. If you are in this situation, professional counselling and psychological support might be useful. Whether you feel that you have a traumatic past or present events that need addressing, or if you are finding it difficult to manage challenges that your family experiences, your family general practitioner is a great place to start if you would like to seek help.
what does the research say about resilience and parents of children with disabilities?
The evidence suggests that resilient parents have better wellbeing and use cognitive coping strategies such as positive appraisal, reframing, acceptance and planning. Parents need to attend to their own wellbeing and health as the basic building block to preparing for the small and large challenges that present themselves in family life. Parent wellbeing and resilience is supported by: • spending time seeking perspective and reflecting on what was done well or what could be improved. • being able to see the positive side as well as the challenging side of an issue. • judging a situation or event from several perspectives including what can be learned or gained, what might be avoided in the future, or what others perceived and experienced. • learning from past events can neutralise or prevent the same scenario in the future, or at least change how we respond to the adverse (difficult or challenging) event. • participating in the daily hassles and uplifts that occur in family life! When we are kind and compassionate to ourselves, we manage family life with more patience.
strategies to build resilience
You are an expert in your own situation and in the types of strategies that may support your wellbeing and build resilience. The suggestions below were retrieved from numerous sources, some research based, others from parents of children with a disability.
PRACTICAL STRATEGIES Include healthy activity in your week— even if it is just 15 minutes a day doing something for yourself. Replenishing yourself will help you stay energised and avoid feeling depleted. Take care of your physical and mental health because good health and self-care are the foundation to coping in everyday life. Journaling is a great way to organise your thoughts and experiences. Reflection and writing is an evidence based strategy to improve coping skills and reduce stress for mothers of children with a disability. Scheduling and planning. Remember that an experience provides forewarning about what may occur if a similar event arises. Planning and writing down what you can do to optimise outcomes is useful and research says that actively writing a goal is more likely to result in success and reduce stress for parents of children with a disability. Talk to others who may have advice or strategies that may help you in your situation. Often others who have managed the same issue are the most informed advisors.
Look for the wisdom in a situation. What can be learned from both the good and not so good outcomes. Mindfulness and meditation and other strategies have proven benefits. Learning mindfulness strategies to implement in daily life, and or learning to meditate are skills that will help you manage daily challenges.
EMOTIONAL STRATEGIES Be kind to yourself. Treat yourself the same way that you would support a good friend who had the same experience. Spend time with supportive others. Share your feelings. Empathetic people can make us feel so much better. Debrief with a friend. Can they offer a different perspective? Let yourself feel disappointed or sad or whatever you need to feel. It’s human. It’s okay. If you can, limit the feelings to times when you are likely to have control over the emotion then you will be developing good self-management. If you find it difficult to control or stop distress or intense emotions, find a friend, trusted person or investigate professional options through your GP. Use humour. Laughing protects us when emotions can be intense. Laughing also reduces the build-up of stress hormones in a similar way to physical activity.
PHYSICAL STRATEGIES Rest. Give yourself time to re-energise. With only 24 hours in a day, your body and mind need to rest and sleep for 6 or 7 hours (or more if you are lucky!). Manage your fatigue. If you are not feeling high on energy, manage the events of your day so that you have the highest energy at the most important times. For example, if you know that school pick up might be challenging, spend the 30 minutes prior preparing your mind, resting your body, enjoying music or something similar. Exercise. Be active. Find something fun that you enjoy, whether it is walking, swimming, gardening or yoga. If you can’t find time right now, make a plan to bring physical activity into your life in the near future. Relaxation and or breathing techniques. Developing skills to calm oneself physically has the benefit of calming oneself in all ways— emotionally, cognitively and behaviourally.
As an occupational therapist who worked with children and young people with disabilities for many years, I noticed that children often have high resilience. So often in a clinic, while visiting a school or home, I noticed that children were able to find joy, try again, think of another way, learn from a bad experience, seek and find comfort in the support of others, and keep a positive outlook. It’s pretty amazing when I think about some of the challenges that the children faced. Children often see the opportunities in front of them as fun, cool, awesome and interesting. Adults might see the same ‘opportunity’ as a challenge. Think about your own child and their resilience. Can you draw inspiration when you think about how awesome your child is and how resilient they are? Tell your child. Resilience is contagious in families. Associate Professor Helen Bourke-Taylor is an occupational therapist and academic at Monash University. Helen is the author of Healthy Mothers Healthy Families, a program for mothers, see www.healthymothers-healthyfamilies.com
rest. give yourself time to re-energise
Freedom is choosing where you want to explore.
Wizzybug! Exciting and fun powered mobility option for young children Wizzybug is a powered vehicle for young children to experience early years in an adapted mobility device. It has a range of controls and seating adjustments and can be used with close adult supervision indoors and outdoors in accessible areas such as level gardens, playgrounds and parks enabling children to have a fun experience with their first wheels. Independent mobility has been proven to assist and encourage important developmental skills, along with giving your child the freedom to safely explore their environment.
- Suitable for children aged between 2-5 years (maximum weight 20kg) - A range of control options including joy stick, specialist switches and remote operation - Easily transportable â€“ dismantles quickly - Has a standby charge of 2 weeks and will usually run for a few days based on moderate use - 8km range on full charge - Maximum speed of 2.9km/hr (speed can be limited)
Wizzybugs can be hired or purchased from CP Tech.
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Find out how The Safety Sleeper can improve quality of life for your entire family! Contact Avant Innovations to learn more and request a trial.
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G o Le t 's ! g n i p m Ca SOURCE KIDS
Camping during the school holidays is an Aussie rite of passage for many families. The freedom of the open road, connecting with nature and getting back to basics is the perfect way to unwind after the stress and busyness of a school term. Except, when you have a child, or children, with disabilities – the basics, well aren’t really that basic at all. It’s true that campgrounds and the wilds of the Australian bush haven’t traditionally been the most disabilityfriendly of locations but with a bit of planning and tenacity plus some knowledge about useful products and services it can definitely be done (and enjoyed by all!).
ARM YOURSELF WITH INFORMATION
BY NICOLE DAVIS
• A big one for many families is toilet access and showering facilities – if disabled toilets are not available check if toilet blocks are big enough for wheelchair access or whether there is room in the stalls for two people. • You also might want to check what local facilities are close-by in case you need medical assistance or access to a grocery for specific provisions. When you’ve narrowed down your search it’s always a good idea to call and chat through your specific needs as online listings can be outdated or ambiguous. A call to a friendly campsite owner will give you the chance to go through some fine details and get some insider knowledge that may not be available online.
RESOURCES TO HELP YOU FIND WHERE TO STAY Each state in Australia has a website for its National Parks where you can start your search for disability friendly accommodation.
OTHER RESOURCES TO LOOK AT INCLUDE: Wheeliecampers.com A really useful resource dedicated to wheelchair users with accommodation reviews including space dimensions and available facilities. Let’s Go Caravan and Camping www.letsgocaravanandcamping.com.au Use their search facility to find destinations around Australia that have disabled facilities. Camping Victoria
If there’s one thing us special needs parents are good at it is intensive research. Before you commit to staying anywhere make sure you’ve done your homework to ensure that a location can accommodate your family’s needs. Many places will promote themselves as being ‘wheelchair’ accessible, but this may not apply to all areas. Some things to considering depending on your situation could include:
NSW: www.environment.nsw.gov.au/nationalparks/ wheelchair.aspx
Similar to the site above but for Victoria only; you can search by sites with wheelchair access.
• The accessibility of the site itself; are their steep slopes on site? Lots of steps? How close to your pitch can you keep your car?
To varying degrees some of these websites also provide information on other all-abilities services provided within the parks which could help you narrow down a location for your trip. For example, Parks Victoria have locations with all terrain wheelchairs, an accessible canoe launcher, beach wheelchairs and more. For families with children on the autism spectrum they also have social script resources for a number of locations that that have been developed in conjunction with AMAZE.
• Do you need a larger than usual tent pitch to accommodate equipment?
QLD: www.nprsr.qld.gov.au/ NT: www.parksandwildlife.nt.gov.au/ WA: www.parks.dpaw.wa.gov.au/ SA: www.environment.sa.gov.au/parks TAS: www.parks.tas.gov.au
PRODUCTS AND SERVICES Once you have your destination sorted, it’s time to start thinking about what to take. Of course, you’ll have all your child’s usual aids and equipment, but also check out our product ideas on pages 58 and 59 for some other items that could come in useful. For anyone who’s really serious about their camping and who needs to accommodate a wheelchair user then take a look at AccessaVan – they’re the first company in Australia that specialises in the provision of quality custom wheelchair accessible caravans. The founder of the company, Anton Wake, became a paraplegic in 1991 and although this may have limited his physical ability it did not diminish his passion for travelling around Australia.
If you’re not up for purchasing a whole new van then the company can also make modifications to existing equipment you may already own; perhaps you need a wider entry door fitted to your existing caravan? Wheelchair lifts or ramps? They can also modify bed configurations, bench heights, install handrails etc. Something to consider for a future NDIS plan perhaps? Visit accessavan.com.au to find out more. If you’d prefer to rent rather than buy or modify your own equipment, then an accessible rental option is provided by Wheelie Campers who are based on the Gold Coast in QLD and provide Australia’s first self-drive wheelchair accessible camper vans. Their vans can be rented as self-drive with pick up on the Gold Coast or delivered to your door nationwide. They supply a vehicle which will accommodate 5 passengers plus a driver and a wheelchair and there is also the option for them to provide you with a driver. The company also provides the services of Accessible Travel Consultants. With info on multiple accessible campsites that let you get close to nature they can work with you to tailor a trip that suits your needs.
OTHER OPTIONS If tent-life – even for a few days feels too much of stretch for your family, then holiday parks with a variety of accommodation options can provide a
similar ‘great outdoors’ experience without quite so much of the ‘outdoors’ that traditional camping supplies. Big4 provide brilliant holiday park accommodation around the country and a number of their locations have accessible cabins and villas within their parks. BIG4 Ballarat Goldfields Holiday Park in Victoria is just one destination where they have implemented a program to improve their accessibility and create an inclusive customer experience for all travellers. According to their website, some of the initiatives they’ve implemented include: • Ramp or ground access in a number of areas such as to the reception, the swimming pool, amenities building, games room and more • Ramp or ground access for some cabin accommodation • Accessible car parking at accommodation and camping areas • Sites conveniently located close to the family bathroom • They also teamed up with Emma from The Wiggles to create a social script for autistic people and their families to prepare for a holiday Also, of note for families of children with autism, Big 4 Renmark Riverfront in South Australia – generated a huge amount of media attention when it launched its sensory room in late 2018. Reilly’s Room, as it’s known, was carefully designed in close consultation with an occupational therapist,
a specialist autism teacher, and autism spectrum disorder (ASD) parents. The facility is set up for use by one family at a time for the comfort and benefit of the user and includes a freestanding hammock, crash mat and weighted blankets and cushions, projector lamps, a gym ball, activity boxes and more. Visit www.big4.com.au to start your search and also consider Reflections Holiday Parks; another provider of holiday accommodation with a number of parks around the country that have accessible features – reflectionsholidayparks.com.au. As with our camp site tips, it’s always best to call ahead before making a confirmed booking to ensure that the facilities offered do indeed meet your needs. Three final thoughts to make it work:
START SMALL AND FAIRLY LOCAL If it’s your first time camping as a family then jumping straight in with a two week, back to basics outback trip may not be the way to go. If it is, then good luck to you (send photos!) but for those of a less cautious nature a long weekend just a short drive from home might be the way to start. Have a plan B (and C) If things inevitably don’t work out for some reason while you’re away it’s always good to know in advance what your options are. Think about food Having a meal plan for the trip will take a lot of pressure off – especially if your child has quite specific needs. Finding out that the only grocery store within 30kms of your camp site doesn’t stock the only brand of white rice your child will eat isn’t going to set the tone for a relaxing few days away. Oh, and last but not least, don’t forget the wine!
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G N I P M CA TO HELP YOU ENJOY ! RS OO TD U O AT RE G E TH T KI
IF YOU’VE BEEN THE JOYS OF CACONSIDERING M YOUR FAMILY, WPING FOR FOUND SOME PR E HAVE COULD MAKE YO ODUCTS THAT U EASIER. HAVE A R LIFE A BIT GET READY TO LOOK AND TO MAKE THE LEBE INSPIRED OUT UNDERNEA AP AND CAMP TH OU SOUTHERN SK Y!R GREAT
COFFEE – WACACO MINIPRESSO
For our coffee lovers, we have you covered! With this nifty gadget by your side, you will never be without a decent cuppa whilst camping. The Wacaco Minipresso is your hand powered espresso machine on the go! RRP $70.00 • www.tentworld.com.au
Wheelie Campers are Australia’s first self-drive wheelchair accessible camper vans! The vans can be rented as self-drive, with pick up on the Gold Coast or delivered to your door nationwide. They supply vehicles which will accommodate up to 5 passengers plus a driver and a wheelchair. With short term accommodation accounting for 70 per cent of their business, they are creating opportunities for our young people and closing the gap between what was once not accessible – the sky is now the limit! They will assist you with any adventure you may have from camping in the wilderness, therapeutic farm stays, fishing, sky diving; and even V8 Supercars! RRP POA www.wheeliecampers.com www.facebook.com/wheeliecampers
SWAG Featuring fadeproof outdoor marine canvas, the bright and colourful swag from Swingz N Thingz will keep your little happy camper snug enough to sleep at night (you might still need to pack the melatonin though!) The swags are a portable sleeping and playzone – as the swag opens up to become a flat play mat, with a pocket for teddy and plenty of room for your own bedlinen. RRP $250.00 • www.swingz.com.au
With the range of tents on the market, it can be mind boggling to choose one! Here is a great alternative and a different approach! A beach gazebo that transforms into a tent. With standing room, and a large surface area, you may find this suits you to a tee, with space for everybody! RRP from $200.00 www.bcf.com.au
SAFETY SLEEPER The Safety Sleeper is a fully enclosed and portable bed – ideal for holiday travel. It is designed to help prevent wandering and reduce visual stimulation during sleep times. Made from durable materials, it also has breathable and washable fabrics in addition to an extra safety zipper system which allows for additional security, keeping everyone sleeping soundly! RRP POA www.avantinnovations.com.au
HAMMOCK The chair hammock from Swingz and Thingz is a great addition for any camping trip, whether in the country or by sea. Maybe you will use yours for a morning nap, afternoon siesta or some sensory swinging time – it’s really up to you! RRP $195.00 swingz.com.au
What’s a camping experience without a few relaxing beverages at the end of the day? With the wonderful BruMate, it guarantees to keep all your beverages cold from the first sip, until the last! (One of our Source Kids mums is able to personally vouch for the coldness it delivers!) RRP from $30.00 • www.brumate.com
Please head our Compe to tition Corner to snap up one of th from our fr ese iend Independen s at tly You!
ADAPTIVE FOOD PREP The Adaptive Food Prep station is ideal for kids who are keen to cook in the camp kitchen! Perfect for kids who may have reduced mobility and fine motor skills, the durable cutting board is ideal for those who have difficulty in gripping or only have the use of one hand. RRP $139.00 www.mobilityhq.com.au
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FISHING RODS What is camping without a spot of fishing? Even if you don’t catch anything, it’s still fun! These perfect kid-size rods will give you oodles of fun at your watering hole! $24.99 • www.bcf.com.au
This sleeping bag liner by Independently You fits inside most standard sleeping bags and comes with a side opening making it easy to get in and out of. The top and bottom have been specifically made to be waterproof meaning the sleeping bag will always be protected. In addition to this the waterproof layer will also stop ground moisture from reaching the sleeper. For those warmer nights the liner can be used without a sleeping bag and just a blanket on top! RRP $54.95 • www.independentlyyou.com.au ISSUE 23
A GUIDE TO
equine facilitated learning BY ELAINE RUSSELL
Interaction with horses has been used in therapeutic scenarios by numerous organisations for decades, but there is still very limited research and few recognised studies into how or why these interactions are beneficial – partly because it is a difficult modality to measure or quantify. Few would dispute that horse interactions are beneficial however, and it is unlikely that such interactions would have continued and developed if participants failed to derive any benefits. There is now a bewildering array of options available and potential participants of ANY equine interaction are advised to undertake a bit of research to determine which modality of therapy may be the most appropriate for them – or ask potential providers a lot of questions! 60
The difference between Equine Facilitated Learning (EFL for short) and other modalities using horses is the absence of any medically certified or medically qualified professional at the session. EFL is NOT Equine Assisted Psychotherapy – we believe the horse is the “therapist” and the provider of any therapeutic benefits and as such the Facilitator of an EFL session is not required to have these qualifications. I have yet to meet the horse who felt having a psychology degree made them a better horse….?! Horses are therapeutic by virtue of just being… a horse. At our organisation – Australian Equine Facilitated Learning (AEFL) we have rescue ponies, ‘Off the Track’ Thoroughbreds and Quarter Horses, so EFL can be good for a wide range of horses as well as people! Relationships between people and animals can have profound benefits whether done on their own or as part of a wider treatment programme. Horses interact with people without judgement or prewww.sourcekids.com.au
AN EFL SESSION MAY INCLUDE:
To assist cognitive skills, fine motor skills, focus.
To work on fine and gross motor skills, intent (emotional control), focus, balance, multi-tasking.
Targeting fine and gross motor skills, cognitive skills, multi-tasking. Benefit from participation in EFL have been observed in the following areas: • Communication • Self esteem • Co-ordination and motor skills • Focus and observation • Respect • Self-control and self-awareness • Relationships
conception – plus they look, smell and feel good! Just hanging around them can improve a situation or an outlook on life. There is no requirement to compete or even ride in EFL – it is about a different way of being with a horse and building different communications and relationships. Being around a horse seems to allow people to experience a new way of “being” and release previous perceptions they may have about themselves. EFL provides a safe space for people to grow and expand into their potential and is inspiring and positive for all who experience it. No horse experience or skill is required to participate in EFL – unless you are the Facilitator! Anyone of any age, background, ability or disability can benefit. The majority of sessions involve interacting with the horse from the ground and although getting on the horse is a possibility, most people will experience EFL and its many benefits without riding.
Sometimes there are benefits to the client being on the horse; their movement can be a foundation for improving sensory processing. The physical benefits of riding can include: • Respiratory control • Improved postural symmetry • Trunk core strength • Improved gross motor skills • Enhanced balance and strength At AEFL we tailor sessions to suit each person’s abilities and aspirations. Sessions can be individual or with a group and usually run for up to an hour. The activities and length of time are led by the client – and an astute Facilitator. AT AEFL, we love what we do; no client is too old, too young, too inexperienced or too challenged!
The ground-based activities are designed to meet a group or individual’s way of learning, existing skills or educational/development goals. Often participants must modify or adapt their energy levels and actions in order to achieve the desired interaction with the horse. When the modified behaviour results in success, the behaviour will often continue after the participant has left the horse. Repeated sessions can result in longer term effects.
AEFL is the prime provider of Equine Facilitated Learning in Australia. For more information please contact: Elaine Russell on 0457 705 089, visit www.efl.net.au or find them on Facebook at facebook.com/AEFLPtyLtd
ELEANOR HARDIE, MOTHER TO ROHAN, EXPLAINS WHY SHE CHOSE EQUINE FACILITATED LEARNING FOR HER SON: “It’s the three way method of communication between Rohan, horse and handler that lowers his anxiety. It clears ‘a bit of fog’ for him to respond and initiate interaction either via speech or body language. Rohan has displayed far more fine motor skills in areas such as brushing, manipulating buckles/ties, handling equipment and is able to release built up intense agitation in a positive medium. Rohan has developed a relationship with the AEFL team whereas other people can be left feeling he hasn’t noticed them. Through observation of the AEFL team I can see the handler and horse must be responsive to communication that is largely non-verbal. In fact, the horse demands communication through body language which is exactly what Rohan needs. Any vocabulary used has become more easily retrieved, precise (honest) and void of unnecessary words in this medium. I can now see Rohan’s skills learnt in EFL generalised into mainstream life or other activities.”
New to Australia - mobility devices for the very young by KK Original Design • LemonSlice - pre-crawling mobility • LemonHalf - prone crawling support • Crawler - crawling on knees in upright position
www.avantinnovations.com.au Phone: +61 2 8315 2834
Who Cares For Carers? The Carers Foundation Australia is passionate about caring for family carers and offers unique wellness programs to restore physical, emotional and mental health, at no cost to eligible Carers. We specialise in wellness programs for parents of children with special needs. We are also passionate about supporting young or sibling carers from 13 years old. The Carers Foundation is the only charity in Australia that offers unique 3-day wellness resilience programs to unpaid carers of all ages, including teen carers.
‘WE REALLY CARE FOR CARERS’ P. 07 3289 4552
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BY NICOLE DAVIS
NDIS TIPS: REPLACING ASSISTIVE TECHNOLOGY Consumables budget in Core, which can be used for repairing or replacing low cost AT or simple repairs (e.g. a wheel puncture) or in the Assistive Technology (AT) budget in Capital Funding. The NDIS website states that for high cost repairs to mobility or prosthetic AT, specific funding should be included as a quotable item. For all other repairs, flexible funding should be available in the budget.
BUT WHAT HAPPENS IN AN EMERGENCY OR IF FUNDING IS NOT AVAILABLE AND AN URGENT REPAIR IS REQUIRED? In December it was announced that to ensure participants can access urgent repairs even when they don’t have funding in their plan, the NDIA National Call Centre would be able to provide authorisation for funds over the phone.
Assistive Technology (AT) and the NDIS – five words that probably make you sigh, scratch your head in puzzlement or send a shiver down your spine. Along with navigating the NDIS processes for requesting, applying for, justifying and receiving these remarkable pieces of kit that have the power to transform the lives of children and their carers, it’s also important to know what you need to do to ensure your child’s equipment gets replaced or fixed quickly should the need arise. What happens when they outgrow their AFOs or their speech device breaks, for example?
planning meeting you will need the following documentation:
In February last year the NDIA introduced new procedures to simplify the process of applying for replacement equipment, doing away with the need to provide a detailed assessment for AT costing less than $15,000.
2. A report from a suitably qualified practitioner confirming there has been no significant changes in the participant’s function or well-being in the last 12 months or expected in the following 12 months (this could be your GP).
Some examples of when the NDIA will consider a replacement appropriate include: When existing AT is... • damaged through general wear and tear (but not through misuse or neglect) • no longer in working order and beyond repair • close to, or has reached the end of its service life • no longer an appropriate size • is worn to a point that it’s unsafe to use or at risk of causing a pressure injury It’s important to note that if you are requesting a completely different/new piece of equipment as a replacement or if the replacement AT is complex with significant customisation then a new AT assessment may be required. To apply for replacement equipment at your child’s
1. Evidence of existing use of the AT Information that confirms your child has previously been supplied/prescribed the AT item including specifications if relevant. Evidence showing how old the equipment is and service history (if applicable) is also advisable. 2. Evidence of no change to functional capacity of the participant. The NDIA states that they require information that indicates there has been no significant change to your child’s functional capacity or no expected change to their future functional capacity. Examples of evidence you could provide: 1. An existing AT assessment report (within 2 years) that provides information about the participant’s current and future functional capacity relevant to the replacement item.
3. A quote for cost of the replacement AT. As mentioned previously, replacement of AT above $15,000 will in most circumstances require detailed evidence, including assessment by a suitably qualified AT assessor. After your planning meeting, and if approved, your NDIS planner or LAC will include the appropriate funding in your plan and you will be able to purchase or source your replacement assistive tech through your preferred supplier. With regards to repairs to assistive technology, at your child’s planning meeting you should discuss the cost of repairs and maintenance of any equipment and provisions should be made in the plan for any maintenance or repairs that may be required. The funding for repairs and maintenance can be allocated in two places in a plan – in the
If a participant needs an urgent repair to their AT supports, and does not have funding available in their NDIS budget, the following action should be taken: Agency-managed participants 1. P roviders should always try to complete a service booking for an urgent repair. 2. If this doesn’t work, the provider should call the NDIS National Call Centre on 1800 800 110 to seek a pre-claim authorisation approval. 3. If a repair is required outside of NDIS National Call Centre hours a repair can be made to make the AT safe and usable or an alternative support hired. Approval for further repair, and/or a preclaim authorisation can be provided on the next business day. Self-managed participants 1. P articipants should pay the provider for urgent repairs directly and then claim against their plan. 2. If there isn’t sufficient funding available in their budget, call the NDIS National Call Centre on 1800 800 110 for assistance. Plan-managed participants 1. T he participant’s registered plan management provider can pay the AT provider for urgent repairs and claim against the plan. 2. If there isn’t sufficient funding available in their budget, call the NDIS National Call Centre on 1800 800 110 for assistance.
WHAT IS AN URGENT REPAIR? Urgent repairs include repairs to equipment the participant is dependent on for safety, mobility, communication, or activities of daily living. Generally, out of hours repairs should be limited to making the AT safe and usable. Information in this article is taken from the NDIA website and is correct as of February 2020 ISSUE 23
NATURAL DISASTER PREPARATION
BY NICOLE DAVIS
Preparing your child and family for natural disasters The bushfires that ravaged so much of our beautiful country over the summer have highlighted just how important it is to be prepared for any type of disaster. It’s important to consider the steps you need to take to keep your family safe, how to relay important information to your child in way that’s appropriate, and how to talk to them about their fears.
Children with special needs are particularly vulnerable in case of an emergency – moving quickly from one place to another, communication needs, cognition, adjusting and reacting to change and emotional situations all present additional challenges.
• If you are all at different locations, where will you meet? How will you communicate with one another?
Here are some points to consider, useful tips and resources to help:
• Keep a list of emergency phone numbers, including neighbourhood and family contacts.
MAKE A PLAN
Knowing what you need to do in advance of any event is not only a practical step, it can also help you deal with your child’s questions and emotions that may arise out of uncertainty and fear. Each family’s plan will look different depending on individual circumstance but some things to include could be:
• What does your home evacuation procedure look like? Using a floorplan of your house, discuss and draw out the evacuation plan and put it on your fridge. Make sure that one person is responsible for assisting your child with special needs. Make sure you have a backup person in case that person is not at home.
• Have an out-of-state friend or relative as an emergency contact for everyone to call. • Give emergency numbers to all family members. • Make a family emergency supply kit (see opposite page for ideas of what to include). • You may like to do up a social story for children who may not understand or find what is happening challenging or frightening. • Prepare an emergency care plan for your child in case someone other than you has to care for them or take them to hospital and include the following: - Your child’s diagnosis – and what that looks like for your child - Allergies - Care requirements - Seizure plan - Medications (including dosage instructions) - Feeding schedule and instructions - Details regarding any equipment - Medical provider contact details -C opies of Medicare card/health care card/health insurance cards - Notes on any special care needs • Learn response plans for your children’s schools or childcare facilities. • Don’t forget to include plans for your pets. Children will most likely be very concerned for their much-loved member of the family so this is an important one! Practising an emergency action plan as a family is also an important step to consider. You can discuss the types of hazards that could occur, go over your family’s plan and practice any elements within the plan.
DEALING WITH EMOTIONS As well as the practicalities of staying safe, there is also the emotional impact of natural disasters to consider. Your child may need reassurance about events that have happened or are happening in other parts of the country, or they may need extra assistance with understanding what they need to do in the event of an emergency situation, or why they have to do something that may feel scary or not part of their usual routine. There are some steps you can take to allay their fears and some great resources available to help.
Social Stories Creating (via Boardmaker or simply with Word or Powerpoint) or sourcing social stories can help both with preparation regarding emergency procedures and also for narratives around natural disasters and why they happen, how we recover etc.
Answer questions and encourage dialogue Validate any concerns your child has and ask them how they are feeling. Answer questions with the amount of information you feel appropriate and use professionally prepared resources (see below) to help.
Monitor media exposure Take care with what your child is exposed to on the TV, radio and online. The intense media coverage during times of disaster can be a source of worry for all ages.
USEFUL RESOURCES TO HELP YOU HELP YOUR CHILD:
PREPARE AN EMERGENCY KIT Your child could help you put this together if you feel this would help them feel safe and secure. Items to put in the kit may include: • Medications: a box of each of your child’s medications with the necessary equipment to dispense it like syringes. Check these regularly to ensure that nothing is out of date. • Food: formula or blended food if tube fed, specialised food, or special snacks/meals. You can keep meals in a freezer, in serving-sized amounts, and clearly labelled with contents, date frozen, date to be used by and amount. Put a note in both the emergency kit and emergency plan to alert the emergency caregiver as to their location. • Spare equipment: for tube feeding and any other specialised feeding equipment (or drink bottle). • Nappies/continence equipment. • If assistive technology is used to communicate, make a plan as to how you will evacuate with the device. Keep a note of model and make information in case you need to replace anything. • Chargers or spare batteries for any devices. • Copies of any social stories you may need to help your child cope with what is happening. • A set of important phone numbers and contacts plus copies of any insurance and Medicare details. • A spare set of anything to help comfort your child – toys, book, clothing, headphones, fidgets etc. • Flashlight. • Batteries. The Australian Red Cross has a useful set of templates you could use to help you prepare your as well as an app and a packing list – www.redcross.org.au/prepare
Children’s Health Queensland have put together a wonderful set of resources called Birdie’s Tree to help families prepare for, cope with and recover from a natural disaster. The resources include seven Birdie storybooks dealing with different disasters such as fire, flood, cyclones and drought and seven interactive games based on the storybooks, which explore weather, feelings, and ‘who helps’ in an emergency.
Autism Tasmania produced a very useful article with suggestions as to how parents can help their autistic child adjust to the changes and the stresses related to the recent bushfires. Many of the tips can be generalised to other natural disasters and events. Within the article there are also two scripts that you can use as the basis of a social story about fires.
The books and games can all be accessed for free online or full-colour professionallyprinted copies of the books can be purchased for $10 per book. Visit - www.childrens.health.qld.gov.au/ natural-disaster-recovery/ to view the whole Birdie’s Tree website.
Australian Red Cross The Australian Red Cross has developed a number of resources to help teachers educate students from pre-school to year 12 about important emergency preparedness and recovery information. The activities, guides and books are also appropriate for parents to use and can be accessed here – www.redcross.org.au/ get-help/emergencies/resources-aboutdisasters/resources-for-parents-andteachers.
www.autismtas.org.au/autism-andbushfire-emergencies Another Bush Fire social story that you can download and adapt to your needs is available from the Early Connections Alliance. www.earlyconnections.org.au/socialstory-bush-fire
Sesame Street While these resources are American rather than Australian the factsheets include some lovely activities and stories for children using the muchloved characters which many children will find familiar and a source of comfort. www.sesamestreet.org/toolkits/ emergencies
Emerging Minds Emerging Minds Community Trauma Toolkit is a vast and comprehensive suite of resources to help support adults and children before, during, and after a disaster or traumatic event. The information and training materials are grouped into five timeframes: Preparedness, Immediate, Short-term recovery, Long-term recovery and Ongoing. The diverse range of quick, easy to access resources includes podcasts, videos and written resources. To access the toolkit visit: emergingminds.com.au/ resources
seats CaANDr RESTRAINTS
CAR SEATS AND RESTRAINTS
Despite there being a large range of standard car seats on the market, they don’t always meet the needs of our children whether it be for postural support or behavioural support. The range for children with disabilities is somewhat smaller but we’ve gathered information on the best products available, ranging from car seats to restraints which all adhere to current Australian standards. Be sure to see the links to each company for further information. * Please always check with your own state’s road safety authority for current legal requirements.
Astris PME www.astris-pme.com.au Britax www.britax.com.au Infasecure www.infasecure.com.au Just Juniors www.justjuniorsdisability.com Medifab www.medifab.com.au Mobility Engineering www.mobilityengineering.com.au PME Group www.pmegroup.com.au Special Needs Solutions www.specialneedssolutions.com.au Step Ahead Paediatrics www.stepaheadpaediatrics.com.au
Accomplish Premium provides an unparalleled level of comfort for larger toddlers and children. Your child will travel in comfort and style right through their forward-facing years.
Allows for extended rearward facing to a large 30-month-old, and forward facing with a harness to a large 8-year-old. Offering best practice safety through all stages of development, it’s the only restraint you’ll ever need.
InfaSecure • Booster - suitable for baby, child 6 months – 8 years • Forward facing until 51cm Features - Gradual recline in forward facing mode - Infant insert with modular lateral support - Extended harnessing with an internal six-point harness through to a large 8-year-old.
InfaSecure • Convertible - child up to 8 years • Seated Shoulder Height: Rearward facing until 39cm, Forward facing until 51cm Features - 9 recline positions in forward facing mode (allowing the restraint to be tailored to your child’s needs) - Infant insert with modular lateral support - Extended Harnessing with a six-point harness through to 8 years
Aspire Premium features an adjustable, locking headrest which enables the seat to grow with your child. It’s also the tallest booster seat on the Australian market, seating children up to a seated shoulder height of 57cm.
Attain Premium is the slimmest child restraint on the Australian market, allowing for extended rearward facing to 30 months, and forward facing to a large 4-year-old.
InfaSecure • Booster - suitable for child 4 – 8 years • Forward facing until 57cm Features - Adjustable, locking headrest - Tallest booster seat in Australia, seating children up to a seated shoulder height of 57cm - Built-in anti submarining design – no need for additional crotch clips
Features - 9 recline positions in Forward Facing mode (allowing the restraint to be tailored to your child’s needs) - Infant insert with modular lateral support - Narrow and compact, and suitable for most vehicles
CARFIX 5 POINT SEAT HARNESS
Provides ultimate security with Unity’s high sidewalls providing maximum side impact protection and use of ISOFLEX™ connectors to ensure an easier installation, correct fit and a safer journey every time.
The 5-point harness can be installed without any modification to the vehicle and is versatile as it is suitable for a very wide age bracket.
Features - The Unity™ ISOFIX compatible baby capsule is Australia’s first baby capsule suitable for newborn up to 12 months (approx.) - Multiple position shoulder harness and crotch straps for use with low birth weight and premature infants without restrictive medical conditions
InfaSecure • Convertible - child up to 4 years • Seated Shoulder Height: Rearward facing until 39cm, Forward facing until 43.5cm
SAFE-N-SOUND UNITY ISOFIX
Britax • Capsule - prem babies • Low birth weight and premature infants
Active Rehab www.activerehab.net.au
Mobility Engineering • Harness - child, youth, adult
Features - Suitable for smaller children and adults - Stabilises occupants who have limited upper body strength and Support - All 5 straps are adjustable to relieve unnecessary pressure from different parts of the body
CARROT 3000 The Carrot 3000 is a comprehensive special needs car seat for toddlers through to teenagers, providing a large range of accessories, growth extensions, optimum postural support, anti-escape options for behavioural issues, and the optional swivel base accessory for ease of transfers. Medifab- Sold through Medifab’s national distributor network* • Booster - child, youth 15 - 36kg Features - From a toddler to a teenager! Through a large range of extension accessories available, the Carrot 3000 can seat your child as they grow, taking away the need to replace the car seat. - Configure for behavioural issues. Add an anti-escape or pen-popper buckle upgrade to prevent accidental removal of the Carrot's harness. - Swivel base for ease of transfers. Amongst a large range of optional accessories, a swivel base is available for easier transfers in and out of the car; a handy addition especially for larger children. * NSW & ACT - Astris PME - GTK Rehab - Regency Mediquip Centre - Total Mobility. VIC - Active Rehab - Astris PME - Step Ahead Paediatrics. South Australia - Professional Assistance for Living. Queensland - Access N Equip - Astris PME - Austech Medical - Special Needs Solutions. Northern Territory - Keep Moving. Western Australia - AC Mobility - Motum. Tasmania - Script Mobility
CARROT XL CAR SEAT The Carrot XL is designed to accommodate older children and adult users who will not fit into the Carrot 3000, catering for safety and the importance of keeping the user in a supported posture for travel. Medifab: sold through Medifab’s national distributor network as above. • Booster - Older children and adults that do not fit into Carrot 3000, 36 – 75kg, 140 – 175cm
Features - Low profile wide seat base provides easier access to the car seat so transfers in and out of the car are as seamless as possible - Ergonomically shaped large head pad provides better support for the user’s head and protects it from side impacts and centrifugal forces - Special large harness design with easy length adjustment to support the shoulders of older users
COSI COMPACT II The Cosi Compact II offers amazing features and the highest levels of safety at an affordable price. Featuring a narrow width, and one of the shortest rearward facing depths of any 0 to 4 convertible car seats – it’s great for situations where space in the vehicle is limited. InfaSecure • Convertible - child up to 4 years • Seated shoulder height: Rearward facing until 34cm, Forward facing until 42cm Features - 9 recline positions in forward facing mode (canbe tailored to your child’s needs) - Narrow and compact, and suitable for most vehicles - Easy install belt path
CAR SEATS VS MEDICAL DEVICES • Car Seats which are deemed medical devices; and do not meet current Australian Standards, must be authorised by medical persons. • It is illegal for any baby or child under the age of seven years to travel in a car without a correctly fitted, properly fastened child restraint that meets Australian safety standards. • There are exemptions to child restraint road rules – this is in the way of Medical Devices, which are car seats and harnesses which do not adhere to current Australian standards. • Health professionals like occupational therapists can work with your family to choose the best restraint for your child. Please also check with your current NDIS rep to confirm if your plan incorporates this under AT devices. • You will require an exemption from the current legal requirements to obtain a ‘Medical Device’ – which your medical professional and/or allied health therapist will assist you with. • Houdini Harness – Important Info – please note that this vehicle harness is not classed as a safety harness but as a medical device for postural support. It must be worn in conjunction with the vehicle safety belt. It is classed as a Disabled Persons Restraints for postural support and as a low risk medical device. For more info: www.medifab. com.au/knowledge-base/houdiniharness-guide
On the GS Seat almost everything can be individually adjusted, for example the seat depth and the position of each arm rest. Pair with the Turny for easy vehicle access.
The Turny Evo is the most advanced seat lift on the market today. It has unique features that make it possible to use in car models where other seat lifts won’t work.
Mobility Engineering • Booster - child, youth 4 – 12 years, up to 180kg
Mobility Engineering • Convertible - child, youth 4 – 12 years, up to 180kg
Features - Suitable for both children and adults of small stature - Almost every aspect can be adjusted and can be fitted with a variety of different attachments - Can be paired with the Carony wheelchair transfer system
DID YOU KNOW
Features -A swivel seat system that suits all ages and can be outfitted with anchor points for a child seat -A llows easy access into a vehicle with minimal assistance required -E asy transfer to and from a wheelchair, without restricting use to wheelchair occupants only
HOUDINI HARNESS 13
HOUDINI HARNESS 22
This is a vehicle positioning harness for children and adults with special needs such as Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), Down Syndrome, Asperger’s disorder, developmental delay or other challenging behavioural needs where the person has problems with attention and safety.
Vehicle positioning harness for children and adults with special needs such as Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), Down Syndrome, Asperger’s disorder, developmental delay or other challenging behavioural needs where the person has problems with attention and safety.
Medifab is the importer of this product and is sold through a selection of distributors nationally, as well as online at minno.com.au • Harness - child, youth, adult
Medifab is the importer of this product and is sold through a selection of distributors nationally, as well as online at minno.com.au • Harness - child, youth, adult
Features - All 3 buckles are behind the individual where they cannot reach them - Can be used on wheelchairs and other seating systems
HOUDINI HARNESS 27
HOUDINI HARNESS 28
The Model 27 Houdini Harness is a full 5-point harness designed to offer postural support and a certain degree of restraint.
A full 5-point harness designed to offer postural support and a certain degree of restraint. This harness is the same as the Model 27, however the seat attachment straps go vertically around the vehicle seat.
Medifab is the importer of this product and is sold through a selection of distributors nationally, as well as online at minno.com.au • Harness - child, youth, adult • Up to 150kg
Features - Provides optimum postural support as well as a certain degree of restraint - Different buckle options are available to prevent removal including an antiescape or a pen-release buckle - Suitable for single or bench seats having vertical attachment straps
Medifab is the importer of this product and is sold through a selection of distributors nationally, as well as online at minno.com.au • Harness - child, youth, adult, 7 years plus • Up to 150kg Features - Provides optimum postural support as well as a certain degree of restraint - Different buckle options are available to prevent removal including an antiescape or a pen-release buckle - Suitable for single or bench seats having vertical attachment straps
HOUDINI HARNESS 31
Vehicle positioning harness for children and adults with special needs such as Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), Down Syndrome, Asperger’s disorder, developmental delay or other challenging behavioural needs where the person has problems with attention and safety. Providing safer travel and management of these loved ones when travelling in the car or other means of transport.
The Kompressor 4 is an A4 rearward facing restraint, allowing extended rearward facing to a large 30-month-old, and then forward facing to a large 4-year-old.
Medifab is the importer of this product and is sold through a selection of distributors nationally, as well as online at minno.com.au • Harness - child, youth, adult, 3 years to adult Features - Suitable for bench vehicle seats only, or in the case of 'deep-bucket' style single backrest seats attaching straps go vertically around the rear of the seat it is installed on - Full 7-point harness with superior torso control and stability
InfaSecure • Convertible - child up to 4 years • Lower Marker (must rearward face under marker) – 34cm, Middle Marker (turn to forward facing) – 39cm, Upper Marker (Stop Use) – 43.5cm Features - Extended rearward facing to large 30-month-old - ISOFix compatible installation - Shorter backrest for better Rearward Facing fit - Forward facing with an internal harness to large 4-year-old (average 6-year-old) - Air Cocoon Technology™ integrated - 9 recline positions and 5 shoulder slot heights
A great seat for those with extra tall teens, as the seat can be purchased without the swivel base, making it one of the lowest sitting special needs car seats on the market.
Extra slim swivel base options allow more space and headroom inside the car. The Starlight is suitable for young children from 9kg, and will grow with the child right up to 36kg.
Just Juniors • Child, youth - up to 60kg
Active Rehab, Just Juniors • Convertible - child, youth • 9 – 36kg, 32 – 44cm
Features - Offers great support with removable lateral supports, a chest support table, pommel, recline, and swivel options - The Sascha comes in 3 sizes, with the largest able to carry 60kg - The low side guides, the optional plug-in pelotte pads and the swivel device optimise transfer
Features - Fast and simple 2 piece harness: torso section and seat strap - Can be used on single and bench seats or with booster 'seat raiser' cushions. Suitable for bus, plane and taxi transport
Features - 5-point comfort harness has shoulder and abdominal padding with a centre pull adjuster - Slim lateral trunk supports - Swivel base system (left turning) - 10° tilt
VICTORIA / TASMANIA
NDIS Childhood Intervention Services Tailored support when and where you need it. At EACH, we believe families are the key people in a child’s life. That’s why we work closely with you to help your child to develop the skills they need to take part in everyday activities. Our Key Worker approach provides a dedicated team member who supports you to identify and meet goals for your child through a family-centred approach.
These goals might include: • Learning to walk • Managing emotions
• Listening and Talking • Sleep times
• Making friends • Meal times
We have a wide range of experienced professionals who support your child’s learning and development with expertise in all areas of development.
These areas include: • Occupational Therapy
• Speech Therapy
Get in touch today to discuss how we can support your family.
1300 003 224
NSW / ACT
We offer NDIS Childhood Intervention support across the North Eastern, Eastern and South Eastern regions of Melbourne.
We know Paediatrics
VICTORIA / TASMANIA
Looking for a dentist for your child? Providing specialist care for your child in a caring environment. Dr Evelyn Yeung B.D.S., D.Clin.Dent. (Paeds.) Dr Linda Huang B.D.Sc., M.Phil,D.Clin.Dent. (Paed)
106 Bailey Street Grovedale 3216 • Ph: 03 5244 0844 Email: email@example.com
We are a family run business providing innovative equipment solutions to facilitate mobility and inclusion for our littlest users. Our extensive range of equipment, sourced from leading suppliers gives us the ability to build a chair that is custom made for your child. Our primary aim is to make comfort a reality and supply equipment that is safe and fit for purpose.
181 Balcombe Road, Beaumaris Ph. 9583 1378
GRP Speech Pathology
Servicing all of Melbourne and we can come to you! Check us out!
www.grpspeechpathology.com.au E. firstname.lastname@example.org
P. 0434 155 592
VICTORIA / TASMANIA
Servicing Melbourne, Geelong and Victoria’s South West
ADVERTISE YOUR BUSINESS HERE
AND TELL MORE THAN 25,000 PEOPLE ABOUT YOUR PRODUCT OR SERVICE!
Contact email@example.com to find out more.
NSW / ACT NORTH WEST AND WESTERN SYDNEY
Leaders in early intervention and disability support • Allied health therapy and assessments: – Speech-language pathology – Occupational therapy – Dietetics – Psychology
• Feeding and nutritional management • Behaviour support • Autism diagnosis • Cognitive assessments • Therapy groups
Mobile service providing supports at home, child care centres, schools, playgroups or at our clinic.
02 9622 8500
growingearlyminds.org.au Growing Early Minds is an initiative of Growing Potential Ltd.
The very first NDIS certified paediatric Occupational Therapy clinic operating on the Central Coast of NSW! Services include: • Food School • Gross and fine motor skills • Development of motor planning, bimanual skills and bi-lateral integration. • SENSEational Soccer- a supported soccer program to enable children with special needs to learn the foundational skills of soccer in a supported, sensory aware environment to support them to feel like part of a team!
Set your child up for success with the support and guidance of our amazing team of therapists With NO waitlist call or email the clinic today!
P: 0467 009 953 E: firstname.lastname@example.org Find us on facebook!
NSW / ACT
• Individual Occupational Therapy in naturalistic environments including the clinic, school, community or home. • Group Occupational Therapy intervention • Sensory processing issues • Equipment prescription • Handwriting intervention • School readiness groups • Social skills
Everything in one place Our Hospital
Our NDIS Supports
For over 70 years we have been supporting children with complex disabilities and medical needs. Our family-centred approach maximises quality of life for children and their carers.
Allowah Disability Support Services is an NDIS accredited disability support provider. We provide a huge range of supports, including:
Allowah is a modern and bright facility in Dundas Valley, NSW. We support children and young people from birth to the age of eighteen who have moderate to severe disabilities and medical needs – such as genetic or chromosomal disorders, birth trauma, cerebral palsy, head injuries, and conditions acquired after birth. Allowah Presbyterian Children’s Hospital is a fully accredited and licensed hospital – but we are a hospital like no other. Allowah is a medical and rehabilitation paediatric hospital, and our medical team provides 24 hour care. The children we support often require a high level of medical care and are at the centre of our service delivery. Our staff are exceptional in the way they care for the children. When a child who has moderate to severe disabilities and complex health needs becomes unwell, it is good to know that Allowah has the skills and facilities to care for them. We admit children to Allowah for a range of reasons, such as seizure management, spasticity management, feeding assessment and aspiration care and prevention, pressure area care, PEG and wound care, post-surgery care and the like. Admissions may be overnight or for a day admission. Children are admitted under the care of the admitting medical practitioner. No referral is required.
short stay accommodation for children with high level needs – planned or emergency,
after school care,
support coordination (for children and adults);
assessments, equipment advice and so much more!
Allowah will tailor make a package of supports for your child based on what you and they want from life. We will regularly set goals with you that mean we can grow and change supports as your child grows and changes. We are flexible and provide a large number of supports… all in the one place.
NSW / ACT
“Thank you so much Allowah for looking after my son while I had a surgery. My son loves it at Allowah and attends the holidays program. Today when I picked him up he did not want to leave. I don't blame him it's such a warm atmosphere, a real home away from home. Everyone is beautiful the nurses, the reception, the therapist, the door man who was so helpful loading the car and the cook preparing food that the kids like. It’s just amazing. I feel blessed to have Allowah.” “We were at breaking point before our daughter started at Allowah and they have changed our life. We will be forever grateful.” “I know our son is getting such good care at Allowah. The staff are well trained. He gets to do great stuff with Allowah. The activities they put on are really good.” “Allowah has been so good for us. Our son needed to have regular blood tests, they helped with that. He needed to have seizure management and they helped with that too.”
8 Perry Street Dundas Valley NSW 2117 02 88773400 · email@example.com allowah.org.au
Welcome to Respite, care and support.
Welcome to Xavier Place, a welcoming home-awayfrom-home for respite, care and support for children and young adults with a disability. Our 6 bed, purpose built centre is a place where kids have fun while receiving the quality care that they need. Where is Xavier Place? 4 Ortive Street, Yeerongpilly is at the entry of Yeerongpilly Green, with its social, shopping and eating scene surrounded by beautiful green space. Xavier Place is easy walking and wheeling distance from the Queensland Tennis Centre, two major train stations and only 6km from Brisbane’s CBD.
What to expect •
fun activities & outings that are age appropriate
hi-lo bed & ceiling hoist in each bedroom
sensory room & quiet spaces
indoor and outdoor areas for play & relaxation
outdoor cinema for movies under the stars
on-site centre coordinator
registered nurse on call
transport can be provided
At Xavier Place, our staff are trained by Registered Nurses and Occupational Therapists and we operate overnight wake and sleep shifts for the safety and comfort of our guests.
Find out more www.xavier.org.au/services/short_term_accommodation
1800 XAVIER | xavier.org.au | firstname.lastname@example.org
Creating a lifetime of opportunities for children with autism At AEIOU Foundation, children with autism aged 2 to 6 receive specialist therapy and care to develop essential life skills that last a lifetime. Contact us for advice on NDIS access, or for details about upcoming open days and workshops. Find a centre near you, by visiting www.aeiou.org.au or calling 1300 273 435.
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Brisbane’s Best LEGO Specialty Shop • Huge LEGO displays and Dioramas to see • LEGO Build area for kids to get creative • Open 7 days a week during school holidays • Variety of activities priced from only $4.00 • Great sensory activity for helping kids focus • Quiet times available • Fully stocked LEGO shop with huge range of LEGO items
Shop D, 1 Finucane Road, Capalaba QLD 4057
Phone: 07 3390 1288
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Books that teach
NO PARENT WANTS TO SEE THEIR CHILD STRUGGLE WITH DISAPPOINTMENT AND CHALLENGES BUT IT’S IMPORTANT THAT THEY LEARN HOW TO DEAL WITH THE FRUSTRATIONS AND FAILURES THAT LIFE MAY THROW THEIR WAY. Like many other life skills, resilience is something that can be learned and books are a great way of introducing concepts like patience, versatility and perseverance to young children. Here are a few of our favourite reads featuring characters overcoming obstacles and bouncing back after defeat.
ROSIE REVERE, ENGINEER
Rosie Revere dreamed of becoming a great engineer. Alone in her room at night, she constructs great inventions from odds and ends but afraid of failure, she hides them away under her bed. Until a visit from her great-great-aunt Rose, who shows her that the first flop isn’t something to fear—it’s something to celebrate. And you can only truly fail, if you quit.
Meet Emmi! She is resilient, independent and courageous. She always tries her best, and even when the going gets tough, Emmi never gives in. This charming story uses verse and beautiful illustrations to model resilience, persistence, and the ability to face challenges with tenacity.
This beloved New York Times bestselling picture book is about pursuing one’s passion with persistence and learning to celebrate each failure on the road to achieving one’s dreams.
HOW TO CATCH A STAR An inspirational story of a boy who loved the stars so much, he decided to get one for himself. Every night he watched the stars in the sky from his bedroom window and dreamed of how he could be their friend and how they could play hide-and-go-seek together. So, one day, he decided to set about catching a star for himself. But how? Oliver Jeffers offers a simple, childlike tale of reaching for the stars, and emerging with a friend.
THE THING LOU COULDN’T DO Lou and her friends are BRAVE adventurers. They run FASTER than airplanes. They build MIGHTY fortresses. They rescue WILD animals.” But one day, when they’re looking for a ship to play pirates in, Lou’s friend has an idea: “Up there! The tree can be our ship!” “Ummm …” says Lou. This is something new. Lou has never climbed a tree before, and she’s sure she can’t do it. This delightful, sensitive picture book depicts what children go through when confronted with something difficult. We see Lou procrastinating, making excuses, imagining alternatives and denying she cares. Ultimately, she faces her fear, and although she fails, the effort empowers her, encouraging a growth mindset.
EL DEAFO Going to school and making new friends can be tough. But going to school and making new friends while wearing a bulky hearing aid strapped to your chest? That requires superpowers! In this funny, poignant graphic novel memoir, author/illustrator Cece Bell chronicles her hearing loss at a young age and her subsequent experiences with the Phonic Ear, a very powerful—and very awkward— hearing aid.
OUT OF MY MIND Melody is not like most people. She cannot walk or talk, but she has a photographic memory; she can remember every detail of everything she has ever experienced. She is smarter than most of the adults who try to diagnose her and smarter than her classmates in her integrated classroom the very same classmates who dismiss her as mentally challenged, because she cannot tell them otherwise. But Melody refuses to be defined by cerebral palsy. And she’s determined to let everyone know it… somehow.
A PERFECTLY MESSED UP STORY In this interactive and engaging read-aloud, bestselling author and award-winning artist Patrick McDonnell creates a funny, engaging, and almost perfect story about embracing life’s messes. Little Louie’s story keeps getting messed up, and he’s not happy about it! What’s the point of telling his tale if he can’t tell it perfectly? But when he stops and takes a deep breath, he realises that everything is actually just fine, and his story is a good one – imperfections and all.
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CORNER WIN ONE OF THESE GREAT PRIZES BY ENTERING ONLINE AT www.sourcekids.com.au/win
Wonderchums are giving away two amazing prize packs to two lucky children. The winners will receive a one-year subscription to go.wonderchums.com PLUS a Wonderchums t-shirt, a super cute Onesie toy and a copy of their inaugural book 'Onesie & Spike Become Flying Friends'.
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ALPHA-H SKIN CARE PACK VALUED AT OVER $300 Made with love in Australia, Alpha-H is committed to achieving clinical results with minimal effort and zero downtime! One lucky Source Kids mum will win a beautiful Alpha-H skin care pack containing the following products:
DISNEY ON ICE PRESENTS DARE TO DREAM 4 X A RESERVE TICKETS
Disney On Ice presents Dare to Dream using iconic stories to encourage people of all ages to follow their heart and embrace who they really are. Disney magic comes to life with a fast-paced, fun, live experience that immerses fans of all ages in on-ice renditions of the ground breaking stories of Moana, Beauty and the Beast, Frozen, Tangled, Cinderella and more... Also featuring a musical guest appearance from Coco and a Winnie the Pooh pre-show! We have two sets of 4 x A Reserve tickets to give away to two lucky Source Kids families for selected performances, at one of the following locations/dates: • Perth – Friday 12 June at 7pm • Adelaide – Friday 19 June at 7pm • Brisbane – Friday 26 June at 5.30pm • Melbourne – Friday 3 July at 2pm • Sydney – Wednesday 15 July at 2.30pm • Hobart – Thursday 23 July at 7pm *please note the tickets must be used on the dates specified above
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BRAVER THAN YOU THINK BOOK VALUED AT RRP $29.99
Braver Than You Think is here to help you in your journey as a parent of a child with a disability. In Emily Hayles’ book, you will learn the 5 BRAVE principles that will help you to help your child live their best life. We have 2 copies of this amazing book to give away! www.moveplaypaedtherapy.com.au/ braver-than-you-think
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