Source Kids Winter 2019 by Source Kids

ISSUE 20

WINTER 2019

THE

EDUCATION ISSUE

SUPPORTING LEARNERS DEVELOPING PENCIL GRIP

TIPS TO GET THROUGH AN IEP MEETING The link between movement, coordination and academic performance

HOME SCHOOLING VEHICLE MODIFICATIONS

GOALBALL

ACCESSIBLE CRUISING

WHAT'S ON

GENE THERAPY - THE STATE OF PLAY IN AUSTRALIA

e h t n i o JSource ids K

community We believe in the unthinkable.

WE LIVE THE UNBELIEVABLE. We know the incredible.

SOURCE KIDS IS ON A JOURNEY.

Come join us.

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ISSUE 20

WINTER 2019

inside FEATURES & ARTICLES

8 Gene therapy – the state of play in Australia

SPECIAL FEATURE - THERAPY

The Wedge 4-year-old Jay, who has hemiplegia cerebral palsy, is the reason behind this cleverly designed and effective Wedge created by his parents. Used as a standing wedge, it is a great stretching tool as it promotes increased mobility and range. It stretches the calf muscle and encourages dorsiflexion, which can benefit children who toe walk. A Wedge Board with its personalised angle made of solid, smooth and soft wood is safe for little feet. You can find out more about the custom-made wedges here www.wedgehut.net or Instagram @wedge_hut

14 Supporting learners – in the classroom and at home 16

Inclusive children: inclusive schools

20 Tackling common concerns to support your child’s primary school journey 23 Tips to get you through the IEP process 25 5 Ways to share information about your child with their classmates and teachers 26 The link between movement and coordination and academic performance 28

Developing your child’s pencil grip

30 Essential facts about home schooling in Australia 33

A brief guide to learning disabilities

Lunch box ideas

MEDICAL ACTION BAG Medical Action Bags are at the forefront of emergency first aid systems – they are leaders in first aid provision for children's services nationwide. These bags include a clear screen with the Action Plan clearly visible, clear name and photo, are insulated and can hold multiple medications keeping everything together. www.medicalactionbag.com

37 Educational resources and websites to support your child’s learning journey 42

Educational product feature

44 Your ticket to freedom starts with your car 48 Vehicle product review – great products to keep our well-travelled travelers happy! 50

How to blitz your NDIS review

Charlize’s gift to gene therapy research

Goalball

Accessible cruise holidays

REGULARS

We Love

Welcome

Family profile – meet the Flannery family

What’s on calendar

State directory

Books for siblings of children with disabilities

Competition corner

ISSUE 20

WINTER 2019

CREATIVITY WORKSHOPS The vision of Toonworld is simple: they empower children through their Creativity Workshops. Workshops are offered across many different sectors including special needs and it is undeniable the amazing levels of concentration and enjoyment shown when being given the opportunity for creative licence. The sessions deliver an awesome experience that enhances children’s determination, selfmotivation and belief in themselves as well as promoting teamwork and leadership skills. Toonworld workshops teach different forms of art therapy, which enhance the students hand-eye coordination, motor skills and creativity. Workshops can be customised to suit the children's skills, needs and likes. www.toonworld.com

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we love LOOKING FOR A WINTER SPORTS PROGRAM? With the winter months now upon us, this one is for the adventure seekers – a winter camp to learn to ski, snowboard or sit-ski? Yes please! To be involved in any of the Disabled Wintersport Australia camps, you need to register as a DWA member, which is NDIS approved. Camps and programs are run at a variety of locations in VIC and NSW to suit all thrill seekers! For further details about memberships and camps visit www.disabledwintersport.com.au/ programs-services/programs/

SOURCE KIDS

WE LOVE

FEATURE PRODUCT

DRYTIME YOUTH UNDERWEAR Medline’s Drytime youth underwear is ideal for children between the ages of 10 and 20, who may be growing out of nappies, but not yet big enough for adult pull-ups. The Drytime underwear contains super-absorbent polymers to help absorb fluid, and wick moisture away from their skin to keep them dry until they’re changed. With its discreet white cover, moisture-resistant barrier and soft elastic, these look and feel like normal underwear, keeping your child feeling comfortable at all times! www.BrightSky.com.au

THE EDUCATIONAL TOY THAT BRINGS LEARNING HOME! Klipee is an educational toy designed in Australia by Laice Moses – a mum who saw the need for an educational tool that was fun, hands on and versatile enough to be individualised. Klipee was designed to unlock the learning potential of children and individuals by enjoying the toy's fun, tactile, and interactive usability. Other benefits are – teething and learning aid; develop sensory and fine motor skills; identify emotional states in self and others; understanding the sequences of events; tactile reward to reinforce learning; supports additional language needs and did we mention it is a bucketload of fun?! www.klipee.com

STUDENTS CREATE A ‘WANNA’ RANGE This creative class designs a variety of products to sell at their local markets! The seven students in later years 3 at Merriang Special Development School in Victoria publish story books they have written and illustrated, the ‘Wanna Read Publications’. Also in their collection is ‘Wanna Bite Dog Treats’, ‘Wanna Wear Bandanas’, ‘Wanna Shop Bags’ and ‘Wanna Cook Book’. The students also run Wanna Bite Café for the students and staff. All money raised goes to the students for further creative projects! To find out more or to purchase any of their products please contact gaff.leonie.l@edumail.vic.gov.au

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WINTER 2019

welcome

TO SOURCE KIDS

As we hit the half way mark of 2019 it’s hard not to feel like the months are rushing by – the end of the financial year is approaching, the end of term two of school is closing in and for many individuals and families they are nearing the end of their first or second NDIS plan.

I can see the anxiety and stress jumping out from social media posts and comments around this topic. Individuals and parents are worrying if their funding will be cut, what reports do they need to organise prior to their review, what evidence can they pull together to prove need, who will their planner be, will they understand our needs, what words do I need to use to prove something is reasonable and necessary…the list goes on! After experiencing this first hand recently with the review of my daughter's NDIS plan, I felt the stress that so many others have been writing about. On top of the daily challenges and tasks that come with parenting a child with a disability, to prepare for the review we are trying to pull together statements, reports, writing lists of what our daughter may/may not need for the next 12 months, thinking through the justification for equipment and aids that we really wish we didn’t need but we do to make hers and our lives easier. So, in light of this – we called for back-up! Enter Sam Paior of The Growing Space and her tips to blitz your NDIS Review – it’s on page 50 and it has some great practical tips to help you prepare and hopefully take a bit of the stress out of your next review. We will also be exploring a number of other NDIS topics in our upcoming issues including ‘parental responsibility’ (don’t get me started on this one), ‘price guides and consistency of funding’ and plenty more – if there are other areas of the NDIS you’d like us to cover, drop us an email to info@sourcekids.com.au and we’ll see what we can do. In our Winter issue we also explore the hot topic of education and a host of subjects to help your child (and you) get the most out of their adventures in the education system. We cover supporting learners, inclusive children and inclusive schools, home schooling, common concerns, tips for the IEP process, sharing information with school, the link between movement and learning and more. It’s another jam-packed issue so I hope you enjoy the read!

Emma xx

WINTER 2019

SOURCE KIDS LIMITED PO Box 690, Noosaville QLD 4566 ABN: 36 614 552 171 www.sourcekids.com.au Send all letters and submissions to: editor@sourcekids.com.au

WRITERS AND CONTRIBUTORS Nicole Davis, Rachel Williams, Emma Price, Kelly Wilton, Rachel Carr, Erin Buie, Dr Ana Mantilla, Professor Nicole Rinehart, Professor Jane McGillivray, Marga Grey, Lisa Hughes, Peter Miller, Sam Paior, Louise Flannery and Julie Jones.

ADVERTISING BUSINESS DEVELOPMENT MANAGER Naomi Sirianni – 0447 755 043 naomi@sourcekids.com.au ADVERTISING Carmen Smith - 0438 847 696 carmen@sourcekids.com.au Renee Swannack – 0499 017 354 renee@sourcekids.com.au

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

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

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

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

Emma Price CEO/FOUNDER 6

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we love

SOURCE KIDS

WE LOVE

FEATURE PRODUCT

MASHBLOX Mashblox® is an assistive technology supporting independent selffeeding. The soft, tactile, clear hollow silicone blox can be filled with a range of textures, including thick liquids to soft puree solids and small finger foods. These are great for sensory processing disorders, dysphagia, and minimising mess! They’ve also had wonderful feedback for speech pathology and fussy eaters, where they add a playful mystique to foods. Use discount code #we<3SourceKids for an exclusive 15% off 4 packs. www.mashblox.com

LEARNING POD GROUP

The Learning Pod Group is a market leader in customised education for children requiring additional learning assistance such as those with autism, ADHD and dyslexia and home-schooled students. Learning Pod Group has one of the largest catalogues of NDIS approved sensory items to assist children with focus in the classroom, enhance fine and gross motor skills and much more. To find out more about tailoring specific supports for your child and their Australia wide service visit https://learningpod.com.au

The Adventures of Kenzie-Moo

The Adventures of Kenzie-Moo is a true story authored by Tanya Savva who was inspired by her daughter Mackenzie, who lives with blindness. Through her adventures, Kenzie-Moo encourages you to see the world in a way that you’ve never seen before. www.tanyasavva.com

COORDICLASS – ONE FOR THE TEACHERS OUT THERE!

MANAGE YOUR NDIS PAYMENTS MORE EASILY Want an easy way to manage your household bills as well as juggling your NDIS payments? Then check out GOBBILL! NDIS participants and plan managers have been using Gobbill to automate and manage NDIS related payments. Gobbill was originally designed to help busy households manage all their bills. However, due to the increased needs of NDIS users in the system, the company has decided to build additional functionality required to make it easy for participants and plan managers to use Gobbill to automate on-time payments, reduce the risk of fraud and support annual audit reviews. Sounds great to us!

Brought to you by the amazing team at Coordi Kids, this is one program that teachers will love! CoordiClass consists of targeted exercises to ensure concentration, attention, and the ability to sit still in any classroom (Year 1 to 12). The whole class participates, following an online video for 5 minutes, so no preparation is needed. The class is not left in chaos, but students are calm and ready to pay attention to task. Teachers report increased work speed; decreased need to re-direct students and an attentive class. To further discover how this could work for your classroom, go to https://coordiclass.coordikids.com

https://gobbill.com

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WINTER 2019

FEATURE

BY RACHEL WILLIAMS

THE STATE OF PLAY OF GENE THERAPY IN AUSTRALIA

The Children's Medical Research Institute Vector Facility team, Dr Leszek Lisowski is pictured in the centre of the back row.

GeneT herapy THE STATE OF PLAY IN AUSTRALIA AUSTRALIA IS HOME TO ONE OF THE FEW VECTOR AND GENOME ENGINEERING FACILITIES IN THE WORLD, AND THE MAN AT ITS HELM IS DETERMINED TO RAPIDLY PROGRESS THE ABILITY TO TREAT CHILDREN’S GENETIC DISEASES. Dr Leszek Lisowski is the Translational Vectorology Group Leader at Children’s Medical Research Institute and is proud of the team’s scientific breakthroughs. Genome therapy aims to cure, not just treat, genetic disorders by delivering functional copies of the mutated gene and/or by correcting the mutations. Dr Lisowski’s facility, which includes six biomedical scientists, including three PhDs, develops AAV vectors for gene therapy. They are microscopic tools, which can deliver healthy copies of genes to the correct tissues and organs inside patients. AAV stands for Adeno-Associated Virus and is referred to by scientists as “Almost A Virus” because it is non-pathogenic and doesn’t cause any known diseases. It requires co-infection with another virus to complete its own life cycle. 8

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One in 20 children is born with a birth defect or genetic condition, and Polish-born Dr Lisowski says we now have unprecedented power to diagnose genetic and acquired disorders.

developed by our team in 2014 has already been taken to clinic and has led to exciting clinical outcomes for the treatment of haemophilia A,” he explains.

“Unfortunately, while the knowledge and diagnostic power have grown exponentially, the progress in disease prevention and treatment has been slower. Gene therapy has the power to fill the gap that has formed and bring real benefits to patients,” he said.

“But the biggest bottleneck that slows down translation of gene therapy tools to the patient is a global lack of vector manufacturing capacity, which significantly extends the timeline and increases the cost of translational studies.”

“Infants who would otherwise have succumbed to spinal muscular atrophy (SMA) are now developing normally with the very real prospect of living full and healthy lives. Individuals with vision impairments owing to retinal disease are seeing more clearly. Those living with haemophilia are being freed from dependency on life-long factor replacement therapy, and cancer patients, previously facing certain death, are being cured with genetically engineered T cells.”

Dr Lisowski says there are a number of research projects underway in Australia that have the potential to develop highly promising therapies for adult and paediatric patients suffering from genetic and acquired disorders.

Dr Lisowski says gene therapy is a fast-moving field. “For example, a unique, bioengineered viral vector

“Due to confidentiality we cannot discuss specifics of our projects … (but they) may change the future of Australian healthcare,” he said. “VGEF is also actively involved in the establishment of Australia’s first clinical grade vector manufacturing facility, which will give Australian researchers prioritised and cost-effective access

DR LISOWSKI SAYS GENE THERAPY IS A FAST-MOVING FIELD. www.sourcekids.com.au

to clinical gene therapy reagents and will facilitate translation of a large number of exciting preclinical programs from bench to bedside.” "Funding projects is a big challenge, with gene therapy significantly underfunded from a political perspective", he said. “There have been over 260 Phase I/II/III clinical trials globally that used AAV vectors with over 2000 patients treated,” he explains. “The cost varied significantly between diseases and is closely associated with the route of administration and total vector dose required. “A single, large-scale, clinical manufacturing campaign can generate as many as 160,000 doses of the vector for the treatment of eye disease, or as few as 12 doses for infants suffering from SMA. The cost per patient can thus vary significantly and can be as high as US$1 million per patient.” Dr Lisowski suggests Australia should promote the development of our own, cutting-edge technologies, and not “passively wait until the other markets get saturated and companies start to look at Australia as just another market to make profit from”. “Our patients deserve better, and many of them simply cannot afford to wait,” he said. Dr Lisowski says his determination is strong to continue progress in the field. “Australia has an incredible population of smart and driven young researchers, but unfortunately, due to limited funding and thus limited opportunities in this country, a large percentage of them leave for the US or Europe after finishing their education. This really hurts Australia and slows down our progress.”

Four-year-old Iluka is one of the faces of the Children's Medical Research Institute fundraiser and awareness campaign, Jeans for Genes day. The fundraiser gives hope for a better world for those living with genetic conditions, with money raised helping the CMRI fund experiments, recruit the best researchers from around the world to tackle complex genetic diseases, purchase essential high-tech equipment, and fund research student scholarships. Iluka’s story would resonate with the one in 20 children born with a genetic condition each year, impacted by more than 6000 different genetic diseases – serious conditions caused by changes in our DNA and often inherited. Seconds after Iluka was born, her mum Cassie

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noticed she had a weak cry similar to a kitten. Her family was initially told she may not make it to her second birthday. “They sent her to special care within nine minutes where she was placed under an oxygen helmet and fed through a tube,’’ Cassie said. “Within weeks, her paediatrician noticed she had a heart murmur and some other congenital heart defects.” At four weeks, Iluka was diagnosed with Periventricular nodular heterotopia (PVNH), which can affect vital organs such as the brain, heart, lungs, connective tissue, and the bowel. It’s a neurological condition where neurons do not migrate properly during the early development of the fetal brain. “Each patient will experience different symptoms, some may only have a heart condition like myself, others can be quite severe and spend months on end in hospital,” Cassie explains. For Iluka, it means that she requires tube feeding and she cannot walk long distances or do too much physical activity. “Iluka frequently gets sick and it hits her a lot harder than it does the average child,” Cassie says. “The simple cold can sometimes have her in hospital on oxygen for up to a week.”

CASSIE IS THANKFUL THAT ILUKA’S FUTURE LOOKS A LOT MORE PROMISING THAN THE FAMILY HAD ORIGINALLY THOUGHT. “Iluka acts like a typical 4-year-old child would, the only difference is, is that she looks like she is 2 years old as she is small for her age,” she says. “Iluka will be tube fed or continue to have her button in place for the foreseeable future. There are days when the tube may only be used for hydration and then of course there are times when her sole nutrition is through her button. “As she reaches her teenage years we will need to be mindful that she may have a seizure and we will cross that bridge if the time comes. Iluka will live a normal life, she will just have annual specialist appointments to monitor her condition.” Iluka’s baby brother, Noah, was born without the condition. “We are very fortunate that he does not share PvNH. It is our understanding from the information given that boys who have PvNH don't have a high success rate of surviving the pregnancy let alone the first year,” Cassie says. “With more research over time I am hopeful that one day they will develop a way to cure PvNH. This may not happen for Iluka but I am sure one day she will have kids and maybe it will happen for them. “This is why Jeans for Genes is so important to us as it allows families to hope for a brighter future.” 10

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SPECIAL EDUCATION FEATURE

INCLUSIVE EDUCATION

EDUCATION

GHIJ KLM NOP QRS TUV

OUR CHILDRENâ&#x20AC;&#x2122;S EXPERIENCE OF SCHOOL IMPACTS NOT ONLY THEIR LEARNING AND DEVELOPMENT BUT ALSO THEIR SELF-ESTEEM, SOCIAL RELATIONSHIPS AND MENTAL HEALTH AND WELL-BEING.

IN THIS FEATURE WE LOOK AT A HOST OF TOPICS TO HELP YOUR CHILD (AND YOU!) GET THE MOST OUT OF THEIR ADVENTURES IN THE EDUCATION SYSTEM.

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EDUCATION

BY RACHEL CARR

SUPPORTING LEARNERS

SUPPORTING

LEARNERS

IN THE CLASSROOM AND AT HOME WHETHER YOU’RE A PARENT, EDUCATOR OR THERAPIST IT’S LIKELY YOU HAVE THE SAME GOAL – A LEARNER WHO IS HAPPY AND ENGAGED IN LEARNING AS MUCH AND AS OFTEN AS POSSIBLE.

THE SECRET LANGUAGE OF BEHAVIOUR

It’s a simple goal, and an achievable one, but sometimes there’s a whole lot of ‘other stuff’ that feels like it gets in the way.

CHANGING OUR AIM

One of the most common concerns shared by those we support at Illume Learning is the time being ‘taken away’ from teaching and learning as a result of behaviours of concern. Exactly what those behaviours are will be different for every learner but they may involve things like: wandering around the classroom, not following instructions, destructive or disruptive behaviours, hitting or pinching peers, calling out and interrupting.

Historically the focus of behaviour support has been ‘how do we stop you from doing the thing we don’t want you to do anymore’. This is problematic for a number of reasons, but primarily because it’s not addressing the underlying unmet need that leads the learner to use the behaviour in the first place. As a result, it’s likely that they’ll just replace the old behaviour with a new one that might be equally as challenging.

The good news is that the use of these behaviours comes loaded with a whole lot of information about how we can support our learner to be happy and engaged – we just have to look for it.

Our aim must always be to ensure that our learner is supported in the way that works best for them. With the right supports our learner will have an increased quality of life, be able to engage in their learning, and, almost as a natural by-product, reduce their need to use the behaviour of concern.

The big secret when it comes to the language of behaviour – it’s not actually a secret at all! All of the information you need to be able to translate is there, it’s just a matter of knowing what to look for (and then what to do about it).

ALL BEHAVIOUR IS COMMUNICATION We all use our behaviour to send messages to the people around us. Over time we learn which actions will get us the outcomes we want and they’ll become part of our ‘behaviour vocab’. The first step in the translation process: understanding the function. Think of the function of behaviour as the purpose. Why is our learner using this behaviour under these specific circumstances? What is the aim or intent? Almost always the function can be broadly classified as ‘to gain’ or ‘to avoid/ escape’.

To gain: • Access to a tangible object or activity. This might be a favourite thing or something the student knows they can succeed at – e.g. Sam pushes Lily out of the way and takes over the puzzle she was playing with. • Sensory input. Sensory seeking students may find opportunities to do or use things that sound, feel, look or taste good – e.g. Jessica hums loudly while completing her handwriting activity. • Attention. Socially motivated behaviours can be both positive and negative, and when it comes to successfully gaining attention remember negative is better than nothing. This is an easy one to accidentally reinforce – e.g. Brad interrupts the teacher by singing and yelling. She stops and tells him to be quiet.

To avoid/escape: • A task, activity, person or situation. This might be something or someone the student really dislikes, finds difficult, feels anxious about, or has had a bad experience with – e.g. Tom yells and swears at the teacher when she tells him it’s time to do his oral presentation. He gets sent to the Principal’s office. 14

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IT’S OUR RESPONSIBILITY TO SUPPORT OUR LEARNERS TO BE HAPPY AND ENGAGED AS MUCH AND AS OFTEN AS POSSIBLE

• Sensory input. Sensory avoidant students may use their behaviour to escape sensations they find challenging or are hyperresponsive to – e.g. Sarah hits and pinches the students around her as her class arrives at assembly. She is withdrawn and spends assembly time in ‘time-out’.

IT'S TIME TO PLAY DETECTIVE! So how exactly do you work out the function? Observe, observe, observe! We need to look at all sorts of things – not just what our student does that we'd prefer them not to. Look out for: • where it happens • the time of day • who is around (other students, teachers etc.) • how is the student travelling generally (tired, sick, sad, excited) • what's happening in the environment (sounds, smells, movement, lights) • what was the student doing immediately before • what is the current response/reaction to the behaviour The list could go on forever but you get the picture – we need to look at everything! Always remember that behaviour doesn't occur in a vacuum, so we need to consider everything happening in an environment so we can truly understand what is going on. When you’re doing these observations it’s really up to you how ‘formal’ you get with the process. The most important thing is to keep it as simple as possible – the easier you make this the more likely you are to do it. If you’re able to keep these principles in mind while going about your day then that’s great. If you prefer to be able to document and record, that’s great too. You might like to keep some notes over a short period of time – try having a small notebook handy, or look at a simple tool called an ABC chart. Whichever way you’re collecting information you just need enough to be able to do some analysis. Are there any patterns to the behaviour? E.g. Does it happen at a certain time, when a certain person is around, or when a particular activity is occurring. It’s in these patterns that we find our function. And truly, that’s the trickiest bit over. Once we understand the function we can go about implementing strategies, teaching replacement skills and ensuring our student has their needs met. If we don’t understand the function first it’s really hard to know which strategies are suitable and, what we see happen all the time, educators and parents are putting in a heap of work not realising they're accidentally reinforcing the behaviour.

SO NOW WHAT? You’ve done the heavy lifting with your observation and analysis, now our focus turns to providing the right supports. The key here is to be proactive – by putting in place strategies that work to target identified unmet needs we can reduce the learner’s need to use the behaviour in the first place. Some examples: James has been using destructive behaviours (ripping paper, scribbling over pages) to avoid writing tasks. We determine he is avoiding these tasks because he has fine motor difficulties and, supported by an occupational therapist, implement the use of a pencil grip and slope board. Jess has been ignoring instructions to pack up and getting very upset when her teacher says time is up on the iPad. We determine that she isn’t being given enough processing time and is becoming overwhelmed by the expectation to move quickly. We implement the use of a visual timer instead of a verbal 5-minute warning, alongside a first-then chart. Joe finds it difficult to transition between environments within the school, particularly classroom to library. He often wanders away or initiates rough play with his peers. Joe is assigned the very important job of carrying the class books to and from the library. The exact strategies will vary depending on the student, their age, the environment and the function of the behaviour. The key considerations are: • simplicity – keep it as simple and easy to do as you can • consistency – ensure that the strategy is implemented every time • communication – ensure all stakeholders are aware of the approach (this can help with consistency too)

MOST IMPORTANTLY Celebrate the wins, both big and small. Seeing changes in behaviour can sometimes take a long time and it can often be hard to sustain energy throughout the process. By having smaller short-term goals it can help us to recognise when we’re on the right track. It’s our responsibility to support our learners to be happy and engaged as much and as often as possible so let’s take advantage of all the information already in front of us and get planning! Rachel Carr is a co-founder and disability consultant at Illume Learning, providing training and support services to schools and families all over Australia. For more info visit www.illumelearning.com.au ISSUE 20

WINTER 2019

INCLUSIVE CHILDREN: EDUCATION

INCLUSIVE EDUCATION

BY ERIN BUIE

INCLUSIVE SCHOOLS

INCLUSION IS THE LATEST BUZZ WORD BEING FLUNG AROUND BY THE GOVERNMENT, SCHOOLS, TEACHERS AND PARENTS. BUT WHAT DOES IT MEAN? ASK A FIVE-YEAR OLD AND IT’S SIMPLE, INCLUSION MEANS INCLUDING EVERYONE. But unfortunately, it’s not quite that simple. So, what does inclusion really mean in practice? How can we make inclusion a reality in schools and society? Is an inclusive society even achievable? Misa Alexander is a mother of three boys and co-founder of Fergus & Delilah, a not for profit organisation focused on helping children belong. She thought she had crossed all the ‘Ts’ and dotted

her ‘Is’ before sending her middle son, who is autistic, to her local preschool. She had met with the teachers and discussed inclusion; how to make the environment more conducive to Hugo’s sensory needs, how to make the curriculum more accessible and how to communicate in sign language to assist Hugo’s speech. As far as she could see Hugo was stepping into an ‘inclusive’ schooling environment. But it didn’t take long to discover that Hugo was having trouble making friends. Quite simply, Hugo was not being ‘included’ by his peers. The gap between Hugo and the other children was just too big. So why, during a time where ‘inclusion’ is a hot topic at most school staff meetings, are children struggling to belong?

This question can best be answered by looking at a philosophy of human development constructed nearly 80 years ago. In 1943 Abraham Maslow outlined the progression of human needs in his paper “A Theory of Human Motivation” in the Psychological Review. He explained how people’s needs begin with physiological (food, water, warmth), then progress up through to safety, to belonging and love, to esteem and finally to the pinnacle; self-actualisation. Needs lower down on the hierarchy must first be fulfilled before progressing up higher.

MASLOW’S HIERARCHY OF NEEDS IS STILL WIDELY REGARDED AND ROUTINELY REFERRED TO BY PSYCHOLOGISTS AND FORMS AN INTEGRAL PART OF TEACHER TRAINING AT UNIVERSITY. So, what does this have to do with inclusion? Inclusion is synonymous with belonging and love. The third step on the ladder. All schools have a legal responsibility to ensure the needs in step one and two are met but the school’s obligations to satisfy the needs of step three become blurry. And yet, according to Maslow we cannot expect students to grow as individuals if they do not first feel a sense of belonging amongst their peers. The New South Wales government just brought out their latest objectives for a Disability Strategy in schools including; strengthen support, increase recourses and flexibility, improve the family experience and lastly, track outcomes (2019, https://education.nsw.gov.au). But they too have forgotten the importance of the third tier on the hierarchy. Children feeling included. How can schools go beyond meeting basic human needs and ensure all children belong? Misa and Erin Buie, a writer and special needs teacher found an answer to this question using a different approach to inclusion. An approach that focuses on fostering inclusive attitudes in children. A child cannot belong in an environment that does not accept him/her for who s/he is. For belonging and inclusion to truly exist; children must be taught how to be inclusive of each other. We teach young children how to share, how to

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INSTEAD OF TEACHING OUR CHILDREN TO ‘STOP STARING’ WE SHOULD BE TEACHING THEM TO SMILE AND SAY HELLO. be polite, and how to take turns but we do not explicitly teach children how to embrace each other’s differences. The result, children like to stare at people who are different. And stare and stare and stare until an adult tells them to stop staring at which point they walk away. So how can we teach children to stop staring and start interacting with each other’s differences? Lev Vygotsky was a great education philosopher who created the Zone of Proximal Development (1978) to explain how children can learn complex concepts. The Zone of Proximal Development is founded on the idea that people can only learn new information if it is based off their prior experiences and they are supported to make these new connections by a person with the appropriate knowledge and skills. When the gap between a child’s own experiences and the new concept is too large then the new concept is unattainable. This explains why children will stand frozen, glued to the ground, relentlessly staring at someone who appears very different to themselves. They simply do not know how to move past staring because their differences are too far from their norm to make a connection with. It is the role of the adult, as the person with the appropriate knowledge and skills, to support the child to bridge the gap between themselves and

the person they are staring at. Instead of teaching our children to ‘stop staring’ we should be teaching them to smile and say hello. Staring is a good thing. It means the child is interested in that other person. Let’s not squash that interest, let’s build off it and welcome the experience. When Misa saw the children in the playground staring at her son she recognised that they were in need of a little guidance in how to interact with Hugo. So, she made up a flier for them to take home to read with their parents. The flier introduced Hugo; his likes and dislikes, some of his autistic characteristics, and what makes him smile. Misa noticed a change at school. The students started saying ‘hello’ to Hugo. They started playing together, hugging Hugo goodbye at the end of the day. Misa’s flier had helped support the children to make the step past staring to interacting and Hugo was now belonging.

The lack of understanding and acceptance of differences is not a problem isolated to mainstream schooling; exclusion and segregation can be a part of any school environment if the students are not taught how to be inclusive of each other. After the success of Misa’s flier she realised that she wanted to help more children learn how to be inclusive of differences. Misa teamed up with Erin and together they published Fergus & Delilah, a children’s book aimed at the neuro-typical child that explores disabilities and differences. A book specifically designed to teach children how to be inclusive. They have sold over 2000 books, largely to preschool and primary school teachers who have been desperately searching for inclusion resources. Misa and Erin are now implementing an inclusion pilot program for early primary school students, which uses a range of highly engaging learning activities and resources to explicitly teach children how to be inclusive. The feedback has been overwhelming. So now when Misa is asked what does an inclusive school environment mean to her she replies; yes, there needs to be ramps and other access facilities and calming spaces, yes the curriculum needs to be adapted suitably, yes basic needs must be met but it must also be a place where every child feels accepted by their peers, so that every child has the opportunity to thrive. If the next generation learns how to be inclusive from a young age than they will grow up to be inclusive employers and co-workers; creating an inclusive society where everyone can belong. For more information about Fergus & Delilah or to purchase a book, please visit fergus-delilah.com

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ADVERTORIAL

THE NEW INNOVATION ENSURING SHOWER SAFETY FOR KIDS Showering for most of us is a relaxing and pampering experience. For parents of children with a disability, showering can be a source of worry and stress around the safety of their child when coming into contact with hot water – what if they bump the tap, or someone else uses the water in the household – will it lead to their child being scalded? The all-new thermostatic shower by Therm-Oz Showers is set to put parents minds at ease. This new invention mixes hot and cold water to a set and constant temperature, even when other taps, toilets or washing machines are in use. And, if the cold water supply were to fail, the shower would instantly shut off to prevent any chance of scalding. The shower is easy to use and is turned on with a simple twist of the right handle, using a quarter turn ceramic disc valve. The temperature is controlled by rotating the left handle and limited

to 38oC as a safety feature by an override stop button. Depressing this safety button allows the user to rotate to a higher temperature up to 45oC maximum, or rotate the handle in the opposite direction for a cooler shower. Cool-Touch technology ensures a low surface temperature of the valve, safe to touch or hold while showering. The surface temperature will not exceed 20oC when operating at 38oC. Therm-Oz Showers thermostatic shower valves are manufactured to meet Australian standards (AS4032.4:2014) and are fully WaterMark approved (licence no. WMK26224). Customers can opt for the Reno Kit, which easily converts an existing manual two-tap shower into a thermostatic shower without requiring pipework alteration or electrics. Alternatively, the New Build Pack with fixing bracket is ideal for new project, development and home builds. To find out more information or to order this innovative safety device for your home, visit www.therm-oz.net.au

Ensure your loved ones are safe in the shower with a thermostatic shower mixing valve from Therm-Oz Showers • Maintain a consistent water temperature • Prevent chance of scalding • Easy child-safe controls • Water efficient, with less wastage • Cool-Touch technology ensures the surface remains cool • Stylish, yet functional – the perfect addition to any bathroom

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EDUCATION

ALLPLAY

TACKLING COMMON CONCERNS TO SUPPORT YOUR CHILD’S PRIMARY SCHOOL JOURNEY BY DR ANA MANTILLA, PROFESSOR NICOLE RINEHART AND PROFESSOR JANE MCGILLIVRAY, DEAKIN CHILD STUDY CENTRE, SCHOOL OF PSYCHOLOGY, DEAKIN UNIVERSITY

PLANNING AND PREPARING FOR A POSITIVE START TO SCHOOL Starting school is a significant milestone! Transitioning to primary school can be particularly unsettling for children with disability because they need to adjust to new routines, new children and adults, and new approaches to learning. Planning and preparation can have a huge impact on how this transition unfolds. Start investigating and getting organised around 10 months before your child starts school. There are various primary school options to get familiar with and to choose from. These include government, catholic, independent and specialist schools, or 20

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consider dual enrolment – if allowed in your state – home schooling or distance education. Seek advice from health, allied health and education professionals, as well as other families with similar needs and experiences to discuss options and suitability for your child and family.

Curricular and extra-curricular activities

When visiting schools, make the most of open days, information evenings and school tours. See classrooms in ‘action’ and talk to school staff. Some things to observe and note are:

Policies

Buildings and playgrounds What adjustments may be needed to the physical environment for your child’s safety and participation?

Are there particular subjects or activities that will need to be adapted to suit your child’s strengths and abilities?

What are the school’s policies around ‘Diversity and inclusion’, ‘Bullying’, ‘Parental participation and engagement’ and ‘Student wellbeing'?

Enrolment What is the process? How can the school accommodate your individual needs? www.sourcekids.com.au

Newsletters

• locking and unlocking a toilet door

School newsletters can give you information about how the school leadership prioritises diversity and inclusion.

• trialling lunchboxes and practising opening them • trying on the school uniform

If your child is going to an early childhood education and care setting during the year prior to school, early childhood educators will write a ‘Transition Learning and Development Statement’. Partner with your child’s educator to ensure this statement clearly identifies your child’s strengths and any supports that will help your child and their learning at school. Consider adding ideas for the new teacher to use that will help your child (e.g. small groups, managing noise levels, visual schedules, etc.).

• meeting some of the children that will be in your child’s class

You can visit AllPlay Learn (www.allplaylearn.org.au) for more about transitions including videos from families sharing their personal experiences. You may also want to read through the Department of Education and Training (DET)’s Positive Educational Planning resource available on their Inclusion portal.

GOOD THINGS TO DO WITH YOUR CHILD Most children feel anxious about going to primary school for the first time. Some children with disability may find this change particularly difficult and will need their families to be very involved. A great way to prepare children is to ensure they attend the orientation program available at the school. You may ask the school principal to be present or for additional visits at different times so that your child can explore some of the classrooms, playgrounds and specialist areas (e.g. performance arts centre and gym). You can also suggest meeting your child’s teacher before the beginning of the school year. Think about the skills your child might need to practise before starting school. Depending on your child’s disability or developmental challenge, these can be:

• carrying the school bag

• getting familiar with the school bell • using the equipment in the school playground • learning how to ‘read’ a visual schedule • practicing the steps that you’ll need to follow each morning to get to school in time Morning drop-offs and afternoon pick-ups can be a tricky and chaotic time especially in the first weeks. Consider asking the school for permission to visit the school before the bell rings – and at the end of the day. Do this during the year prior to your child beginning school so that your child and you can become familiar with the sounds, crowds and pace of morning drop-offs and afternoon pick-ups. Simple stories are a fabulous way to introduce and familiarise your child with what they will experience at school.

SEPARATION ANXIETY AT SCHOOL Anxiety is a common co-occurring condition for many children with disability and separation anxiety can be more severe. Children with separation anxiety become upset when separated from family members. They may find separation at the beginning of the day difficult and some can even refuse to go to school. Try: • Acknowledging your child’s feelings • Teaching emotion recognition and regulation • Reassuring your child with warmth and calm support • Partnering with teachers to arrive to school earlier and/or think of a safe space for your child to start the day in instead of joining the whole group from the beginning of the day

Meetings with teachers and other professionals at your child’s school provide opportunities to discuss your child’s strengths and areas where support may be needed. Share ideas about effective strategies with teachers and the school to create some consistency across settings to achieve goals. These simple tips can help you prepare for these meetings: 1. Be ready, know what you want to say 2. Have a positive attitude 3. Start with your child’s strengths 4. Follow with areas of support 5. D iscuss ways to create consistency between home and school Consider using AllPlay Learn’s Strengths and Abilities Communication Checklist to get ready. Where possible, involve your child in identifying what they perceive as their strengths and also their view of where, when and with what they need support!

YOUR WELLBEING

• Listening to your child and letting them choose where they want to say goodbye

A high level of involvement in your child’s education can be extremely rewarding but also emotional and challenging at times. Remember to:

• Sitting outside the classroom or coming in as a parent helper and reducing this additional support gradually

• Celebrate small and big successes and milestones (yours and your child’s)

• Learning more about anxiety and sharing some or AllPlay Learn’s evidence-based strategies about anxiety with your child’s teachers

RESPONSIVE COMMUNICATION Parents often feel apprehensive and have mixed feelings about their child’s schooling. Keep in mind that your positivity will increase your child’s confidence so remain enthusiastic and positive when you speak to your child about school. Partnering with your child’s school and teachers will help you build on your child’s strengths and set appropriate goals for your child’s personal development and learning. Communicating regularly with your child’s teachers can also assist you to pre-plan your child’s days with knowledge

about potential changes such as, relief staff in your child’s classroom, incursions and excursions, safety drills and other variations to everyday routines.

• Keep to your family’s routine as much as possible • Strengthen your support network • Join groups for families with similar experiences • Stay physically active • Try breathing and relaxation techniques From July 2019, Victorian families, educators and teachers will have a new online program with evidence-based information and resources to support inclusive education for children with disability and developmental challenges. AllPlay Learn is the newest initiative from the AllPlay program from the Deakin Child Study Centre with funding from the Victorian Department of Education and Training. Visit AllPlay Learn to find out more. www.allplaylearn.org.au ISSUE 20

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

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EDUCATION

IEP PROCESS TIPS

Tips to get you through

the IEP process IEP STANDS FOR INDIVIDUAL EDUCATION PLAN – IT’S BASICALLY A WRITTEN PLAN THAT OUTLINES YOUR CHILD’S GOALS FOR THE YEAR AND THE METHODS YOUR CHILD’S SCHOOL WILL USE, I.E. HOW THEY WILL ADAPT THE CURRICULUM, TO ENABLE YOUR CHILD TO MEET THESE GOALS. The format for IEPs will differ from school to school but to be effective your child’s plan should state clear, immediate goals and time-frames, be written in language that everyone understands (including parents) with details of who is responsible for implementation and coordination and state how progress will be assessed and monitored. As your child’s parent and advocate you should be involved in the yearly IEP planning and review process. The school may understand the curriculum, but you can help them understand your child better, give guidance on how best to work with them and also provide input to goal setting and prioritisation. The IEP process and meetings can be difficult for many parents but you should not feel intimidated – you are the expert on your child, their abilities and their needs! Here are some pointers to help you get the most benefit out of the process.

• If your child already has an IEP make sure you review it before the meeting so that you’re aware of where things stand currently and see the progress your child has made against the goals. • You are most likely having ongoing conversations with your child’s teacher and any aides at the school but make sure you have current updates from them before the meeting if you can so there are no huge surprises. • Gather any background information and reports that you feel might be useful. It also helps to have a list of your child’s strengths as well as their weaknesses and areas where you feel they need support. Due to the nature of an IEP you may spend quite a lot of time focusing on what your child can’t do but don’t be disheartened by this. • Also prior to the meeting, write down any questions, concerns or suggestions to take with you. IEP meetings can often feel rushed so if you have notes to refer to you won’t forget to discuss anything important. • If your child hasn’t met the goals from their previous IEP, be prepared to ask why they were not achieved and also see if you can provide input on ideas. Were the appropriate supports in place to help them achieve their goals? Or were the goals not realistic in the time-frame? What road-blocks were there throughout the year? • Have an idea of what you would like your child’s goals for the current year to be. Remember to include academic, behavioural and physical goals. • At the meeting, make sure that the goals being set are achievable and measurable, make a note of any resources required and time-frames. • Explain what you are doing at home; is there anything that works that could be implemented at school – visual routines, social stories etc? • If there is anything you don’t understand, ask for clarification, especially if the conversation veers into ‘education jargon’. • Choose your battles carefully. You do not want an all-out war on everything at the meeting. The goal is for the school and you to work together for the benefit of your child. It’s not about rolling over or staying silent but look at what’s winnable and worth fighting for. Also, have an open-mind. Be prepared to consider proposals that you may not have thought of previously. • If you feel very worried or intimidated, ask if you can take a support person with you to be an extra set of ears and to help you remember what was discussed. • Bring tissues and wear waterproof mascara. Discussing your child in great detail can be an emotional experience. Don’t be afraid to cry – it’s okay – you’re only human! • Don’t feel pressured to sign off an IEP there and then at the meeting; take it home to review and sign. It’s a lot of pressure at the meeting and you don’t want to forget to include anything. • Remember that an IEP is there to help your child reach their full potential. Everyone is working towards the same goal, so be prepared, but not nervous.

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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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5 1

EDUCATION

PROVIDING INFORMATION TO SCHOOL

WAYS TO SHARE INFORMATION ABOUT YOUR CHILD WITH THEIR CLASSMATES AND TEACHERS. This may not be something everyone wants to do but if your child is in mainstream school you may be looking for some strategies to communicate information about them and their diagnosis to their peers and teachers. Other children may be curious about your child – perhaps the way they communicate or why they may do some things differently to others in the class, while teachers may be grateful for some further tools to add to their repertoire. If you do wish to share whatever you feel is appropriate here are some simple ways you could approach the task:

READ A STORY ABOUT CHILDREN WITH SIMILAR DISABILITIES This can be a good idea, as it shifts the focus away from your child while still providing valuable information. Ask around or contact some of your favourite support groups or special needs organisations for story suggestions or write one yourself! Hearing a story can be a great way for young people to absorb information about a particular topic. Although it may seem daunting, these conversations can be so useful to assist your child's education journey. You are their best advocate and any information you can provide to help classmates, teachers and other parents will help your child on their way.

HAVE A Q & A SESSION

If you’re comfortable to do it, a question and answer session can be a great idea because it gives people the opportunity to ask their own pressing questions. You could prepare an introduction or some questions to get the conversation started, before opening it up to others. A teacher could assist you, by working with the other students to craft some questions before your visit. You could also do a session with a team of staff at an after-school meeting to broaden their knowledge of working with special needs children.

WORK WITH THE TEACHER

Work with the classroom teacher to develop resources and strategies that work best for your child. They will have likes and dislikes, or particular topics of interest that their teacher can incorporate into lessons or ongoing projects. Remember that, although the teacher is an educational expert, you are the parent and you can provide additional valuable information that will help them do their job well.

CREATE A LITTLE PRESENTATION

ASK YOUR CHILD’S TEACHER IF YOU MAY BE ABLE TO COME IN TO GIVE A SHORT PRESENTATION TO THE CLASS, OR JUST TO STAFF, ABOUT YOUR CHILD’S ADDITIONAL NEEDS. FOCUS ON THEIR SKILLS AS WELL AS THINGS THEY FIND CHALLENGING, SO TEACHERS CAN SEE BEST HOW TO PLAY TO THEIR STRENGTHS. IF YOU’D RATHER NOT SPEAK IN PERSON, YOU COULD POP THE SAME INFORMATION INTO A POWERPOINT OR GOOGLE SLIDES PRESENTATION TO BE SHARED AROUND.

MAKE A LEAFLET OR BOOKLET

A leaflet or booklet with information could be useful, especially if you’d like to distribute multiple copies. Make sure you include plenty of strategies for classmates and teachers to use when working alongside your child. Dot point information is easier to digest and come back to than big blocks.

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EDUCATION

BY MARGA GREY, MSc OT

LINK BETWEEN MOVEMENT AND EDUCATION

THE LINK BETWEEN MOVEMENT AND COORDINATION

AND ACADEMIC PERFORMANCE

THE RELATIONSHIP BETWEEN EXERCISE AND ACADEMIC PERFORMANCE HAS LONG BEEN OF INTEREST, BUT WITH MOUNTING PRESSURE ON SCHOOLS TO HIT ACADEMIC MILESTONES, BREAK-TIME AND PE LESSONS ARE INCREASINGLY AT RISK IN FAVOUR OF LENGTHENING TRADITIONAL ACADEMIC BLOCKS. Science and research suggest, however, that cutting back on PE is not the answer. In fact, it could be making the problem worse. Only in the past 10 years or so have some of the connections between coordination/motor skills and cognition become clearer. Specifically, research points towards the fact that academic achievement is heavily influenced by visual motor coordination and attention span.

HOW PHYSICAL ACTIVITY PROMOTES MENTAL HEALTH AND LEARNING Of course, we all know the importance of regular physical activity for our children. Cardio-respiratory benefits, bone density, lower instances of chronic degenerative diseases, strength, endurance, flexibility, motor skills coordination and agility – not to mention emotional well-being, self-confidence, and helping with social bonding among peers. All these benefits are promoted simply through regular exercise. But did you know that physical exercise also improves brain function and learning? When aerobic exercise gets you panting in order to bring in more oxygen to your muscles, it also means that your brain is getting a boost of oxygen. Aerobic exercise affects parts of the brain where learning take place: • Exercise releases norepinephrine, a chemical responsible for focus, alertness, and sleep patterns. • It also releases serotonin, which is responsible for memory, learning, regulating sleep and mood patterns. • Exercise also promotes the release of a protein that stimulates the part of the 26

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brain vital to learning and memory (brain derived neurotrophic factor). • One of the brain’s responses to physical exercise is an increase in the size of the hippocampus – the learning centre of the brain. • The brain’s prefrontal cortex also grows during physical activity, a part of the brain responsible for self-regulation and emotional control in social situations. (The direct correlation between emotional control and academic performance was revealed in a study of over 1000 students over the course of 30 years!) As you can see, your brain actually changes physically and chemically during physical exercise. A healthy, well-developed brain, coupled with an ability to focus, stay alert, get adequate sleep, and emotionally self-regulate, all directly help children in the classroom.

CERTAIN MOTOR SKILLS AND COORDINATION EXERCISES IMPROVE COGNITION Several scientific studies have demonstrated a relationship between specific sets of motor skill activities and improved brain function. It turns out that the neural networks used during motor skill coordination are all within the same network of pathways used by the brain to assist the learning process and memory. This discovery around the year 2000 opened up the door to an onslaught of investigations linking motor coordination and academic performance. Over the past 10-15 years, the results show: • Fine motor skills in preschoolers are a strong predictor of later reading and maths achievement. • Bilateral body coordination improves fluid intelligence (logical thinking and problem-solving). • Fine motor skills affect visual processing and visual perception, which were both directly correlated to academic achievement. • Parts of the brain usually associated with motor activity actually light up simultaneously during certain cognitive tasks. That means there are neural connections made between the parts of your brain used to coordinate movement and those used to process learning.

The great news is twofold: 1. It only takes 15 minutes a day 2. Improvements are permanent One study even showed that just 10 minutes of acute bilateral coordination exercises promoted more improvement in concentration and attention of school children than a normal physical education lesson with the same duration Additionally, some of these changes, such as neural connections made, are permanent. So, a child who forms more neural connections during exercise will have those functions forever, just from having performed exercises that awaken connections in that part of the brain.

HOW DO WE HELP OUR CHILDREN IMPROVE ACADEMIC PERFORMANCE? One way is simply to make sure our students and children are doing activities that develop motor skills and coordination.

Childhood development experts like myself are passionate and excited about this type of research. I’ve spent my career following this research and participating in the work to help children perform at their peak. It’s overwhelming and confusing for parents to see their child struggle through school, so if something as simple as daily exercise done in specific routines can make a difference, then it’s worth it. The programs developed by paediatric occupational therapists, are designed with all the latest research in neuroscience in mind, using sound neurodevelopmental principles. For example, the series we use at CoordiKids follows eight levels of advancement through each of the skills shown to improve academic achievement in routines of 15 minutes per day. Level 1 Level 2 Level 3 Level 4 Level 5 Level 6 Level 7 Level 8

Movement Processing Motor Skills Brain Bridging (Bilateral Integration) Laterality Posture & Balance Rhythm Praxis Applied Sensory Motor Skills

There are also many activities you can find online to do with your children in your daily routine or playtime to incorporate these types of movement. (Pinterest always has great inspiration!). By following such a routine, your child’s body and brain learn to work together efficiently and automatically you’ll see improved social interaction, self-esteem and confidence, better concentration, less fidgeting during class, and overall improvement in memory and learning abilities. A child with a disability will benefit as much from exercise and movement as any typically developing child. I have seen gains in self-regulation, physical movement skills, self-confidence and emotional maturity in many children after embarking in appropriate exercise programs. Marga Grey (MSc OT) is a pediatric occupational therapist with a keen interest in children and their families. She is CEO in charge of program developing at CoordiKids - www.CoordiKids.com. Marga also provides therapy at Tyack Health, a multi-disciplinary private practice in Brisbane.

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EDUCATION

BY LISA HUGHES, OT

AN OT'S GUIDE TO IMPROVING PENCIL GRIP

DEVELOPING YOUR CHILD'S

pencil grip

As occupational therapists, we are often approached by teachers and parents with concerns about their child’s awkward pencil grasp. Left unaddressed, pencil grip problems can end up affecting a child’s academic performance at school. When children can see they’re not keeping up, it can lead to anxiety, frustration and low selfesteem, leading them to fall even further behind.

It’s important to remember that pencil grip acquisition is developmental and in this article, we are addressing pencil grips for 5-6 year old children. The most efficient way to hold a pencil is the dynamic tripod grasp (similar to that in the image below) where the pencil is positioned between the thumb and index finger with the pencil resting on the middle finger. Another option is the quadrupod grasp, where the pencil is positioned between the thumb, index and middle fingers, the fourth finger stabilises the pencil and the fifth finger is curled in towards the palm. Being able to hold a pencil correctly requires a child to have a range of foundation skills in place, so if your child isn’t using one of these pencil grips yet, the following fine motor activities can help them develop the skills they need to hold their pencil functionally, and write more easily.

FINE MOTOR STRENGTH Kids need strong hands and fingers for a whole range of day-to-day activities for school and play. Having strong wrists, hands and fingers helps children hold their pencil functionally, as well as helping them write with endurance and fluency. Some great exercises to help build your child’s fine motor strength include: Gross motor activities: Wheelbarrow walking, climbing over obstacles, animal walks. Paper crumpling: Have your child crumple up sheets of newspaper or scrap paper into the smallest, tightest ball possible. Increase the challenge by only letting them use one hand to crumple the paper. Once you have small crumpled balls, try to flick them at a target. Tape races: Get your child to tear off lots of pieces of masking tape and place them down on a flat surface (e.g. a table or the floor). Then have a race to see how many they can peel off in one minute! You could also use the strips of tape to make artwork. Play-Doh and Theraputty exercises: • Make a spider or octopus by having your child first roll the putty into a ball, flatten it down, and then pinch out eight legs using their pincer fingers (thumb and index finger). • Make spaghetti by having them pull off small pieces of Play-Doh and roll them into long ‘noodles’. Pegs: Pinching and squeezing clips, pegs, tweezers, or even tongs helps build hand muscle strength. • Have your child use pegs to pick up pom poms and move them into a bucket or sort them into groups by colour or size. Have a race to see who can do it the quickest! 28

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SEPARATION OF THE TWO SIDES OF THE HAND Did you know our hands can be separated into two sides? The precision side (thumb, index finger, and middle finger) and the power side of your hand (fourth and fifth fingers). Being able to use the two sides separately is important for moving and using objects like pencils, cutlery and scissors. We are best able to control the ‘precision’ side when our ‘power’ side is stable (curled up into our palm or extended away from the other fingers). In handwriting, this allows for fluency and control, which ultimately promotes neat handwriting. A great exercise to assist your child with this is encouraging them to hold something (like a piece of LEGO, ball of Play-Doh or cotton wool, an eraser, button or coin) with their fourth and fifth fingers, while using their precision side by doing one of the following: • Flipping coins • Playing Connect Four or Battleship • Creating shapes or pictures using pipe cleaners or wikki sticks • Rolling Play-Doh into small balls • Squeezing a spray bottle with the pointer and middle fingers • Placing coins into a piggy bank • Colouring, writing or cutting

OPEN THUMB WEB SPACE The thumb web space is between your thumb and index finger (it makes an “O” when you make the “OK” sign). An open thumb web space is necessary for tasks requiring in-hand manipulation, such as moving coins from the palm to the fingertips or picking up a pencil. If the thumb is squashed up against the index finger, it makes it hard to move items. Writing with a closed web space often causes poor and slow handwriting, especially as kids are expected to write at faster speeds the older they get. Activities: These activities can help open your child’s thumb web space: • Roll Play-Doh into small balls using the pads of the thumb and index finger.

IN-HAND MANIPULATION In-hand manipulation is the ability to move small objects around in your hand without using the other hand to help. This is, perhaps, the most complex fine motor skill as it involves three components: 1. Translation: Using your fingers to move or ‘squirrel’ a small item from your palm to your fingertips (e.g. when you hold a coin in your palm and move it to your fingertips to push it into a piggy bank or vending machine). 2. Shift: Moving an object using the pads of your fingers (e.g. adjusting your pencil grip, or manipulating a button or a zipper with the fingertips). 3. Rotation: Rolling an object using your fingertips (e.g. rolling a pencil in your fingertips, turning a pencil over to use the rubber, or opening a bottle top by rotating the lid between your fingertips). If your child has difficulty with in-hand manipulation, they may use both hands for activities that would usually only require one or they may need to unnecessarily stabilise an object against their body to get the job done. You can try these activities to improve your child’s in-hand manipulation, which will ultimately encourage use of a functional pencil grasp:

PENCIL GAMES: • Hold the pencil in the fingertips, ready for writing, then “walk” the fingers to the eraser end of the pencil, then back to the tip. • Turn the pencil between the thumb and fingertips: try turning it like a windmill in one direction, then the other. • Practice flipping the pencil from eraser end to tip end.

EXTRA HELP It’s important to try to improve a child’s pencil grasp earlier, rather than later because the older they get, the harder it will be to break their poor habits! Our advice is to have a break from the iPad and screens and to play with as many toys/utensils as they can get their hands on… Let them explore (with some guidance in the four areas above) and they will ultimately help themselves to produce controlled, legible handwriting!

• Pop bubble wrap (this can be fun to join in too!). • Thread plastic beads onto a string, place cereal Os onto toothpicks, or stringing straws onto yarn. • Play games like checkers where children have to grasp small disc-like pieces with a pincer grasp between their thumb and the pad of their index finger. • Flicking a marble at a target.

Lisa Hughes is the founding director and Senior Occupational Therapist at Occupational Therapy Helping Children, which is based in Sydney’s Northern suburbs. The practice supports a wide range of children with disabilities, through individual treatment sessions, group programmes, screenings and running information sessions for parents and teachers. For more information visit www.occupationaltherapy.com.au ISSUE 20

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EDUCATION

A GUIDE TO HOME SCHOOLING

ESSENTIAL FACTS ABOUT

HOME

SCHOOLING IN AUSTRALIA

IS HOME SCHOOLING A SUITABLE OPTION FOR YOUR CHILD? WHAT DOES IT INVOLVE? WE ANSWER SOME COMMONLY ASKED QUESTIONS WHEN IT COMES TO THIS ALTERNATIVE STYLE OF EDUCATION. 1. WHO CAN HOME SCHOOL IN AUSTRALIA AND IS IT LEGAL? Home education is legal in all Australian states and territories. Children in Australia between the ages of 6 and 17 (Tasmania 5 to 16 years) must be either in school or registered to home school. Children under 17 who want to leave school must apply to home school or meet particular workforce or vocational education requirements. Each state and territory in Australia has its own set of legal requirements for home schooling.

2. WHY WOULD IT BE AN OPTION FOR CHILDREN WITH DISABILITIES? There may be a number of reasons you consider home schooling. Your child may need to be home-based because of medical or behavioural reasons or you may be finding that despite the

best intents of the school, a ‘one size fits all’ learning environment simply does not suit your child and the way they learn. With home schooling you can tailor learning to suit your child. Stepping away from a textbook and the ‘test’ mentality can stimulate many different types of learning. Different home schooling methods can work well for children with dyslexia, sensory processing disorder, autism, bipolar and ADHD, among other diagnoses.

school your child. Samples are available on the VRQA website – a www.vrqa.vic.gov.au

There are many resources and tips available to help you develop a curriculum for your child. Homeschooling Downunder (www. homeschoolingdownunder.com) provides helpful resources and suggestions such as:

According to Homeschooling Downunder, some popular methods include:

• Copywork – can often take the stress out of handwriting because children only need to concentrate on forming letters and not what to write. Printing on cream or soft pastel paper can help children with dyslexia. • Reading Aloud Living books – can help children get the big picture even if they can’t read at grade level. • Oral narrations – can test comprehension and help memory without a written component. • Nature study – a photographic nature journal doesn’t require fine motor skills.

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Styles of home education vary greatly, from formal to informal and will depend on the home educating experience of the parent and the children. Support organisation, the Home Education Association (HEA) - www.hea.edu.au/ does not produce education materials but has programming aids available for purchase to help parents.

• Eclectic home school method – blends different styles of home school philosophies and allows maximum flexibility. • Traditional home school method – School At Home – uses workbooks and textbooks to create a school-like environment at home. • Charlotte Mason method – with a motto of ‘education is an atmosphere’, this method focuses on using living books, observing nature and developing a child’s mind and memory. • Classical home school method – an academic method based on the great books in literature. It incorporates a ‘Grammar Stage’, ‘Logic Stage’ and ‘Rhetoric Stage’ to support child development.

• Short lessons help children with short attention spans.

• Natural learning – uses natural curiosity and learning opportunity and works with the maturity and evolution of the child.

3. IS THERE A HOME SCHOOL CURRICULUM? WHAT ARE THE DIFFERENT METHODS?

• Unschooling – this lifestyle-based approach has no curriculum, timetables, schedules or school materials, but supports an individual child’s passions and desire to learn.

There is no set home school curriculum. The state or territory you live in may stipulate specific requirements. In Victoria, you must submit a learning plan before you can be approved to home

• There are many other methods, such as the

• Unit study learning – a theme-based, holistic teaching method incorporating several subjects and learning styles.

www.sourcekids.com.au

5. ARE THERE ANY DRAWBACKS? Common arguments against home schooling are that: • It isolates children • Children are usually taught by someone who is not trained to teach • It has a financial impact on the household with one parent out of paid work • It can limit educational attainment But, the research on home schooling is neutral, with home schooled children appearing to do neither worse nor better than those attending regular school. Additionally, many home school parents are trained teachers. However, many home school parents exclude their children from standardised tests, such as NAPLAN, so the data is inconclusive.

6. HOW CAN PARENTS DEAL WITH THE SOCIAL ASPECT OF BEING TAUGHT AT HOME?

THE CONSENSUS IS THAT HOME SCHOOLING SHOULD BE DIFFERENT FROM SCHOOL. PARENTS SHOULD TEACH RESPONSIVELY, USING THEIR CHILD’S CUES AND INTERESTS TO GUIDE THEIR STUDY.

Montessori method, the Steiner method and the Robinson method. You don’t need to choose just one style, as many ideas overlap.

4. WHAT ARE THE BENEFITS OF HOME SCHOOLING? Home schooling has many benefits such as: • Offering individualised attention in a safe learning environment • A tailored, flexible learning experience • The opportunity to broaden the educational experience, through excursions and volunteering • Exposing children to subject areas they would not otherwise be able to access • Providing an alternative option for students who don’t ‘fit’ the school mould, due to a diagnosis, bullying or other issues

One way to make sure your children are wellsocialised is to involve them in extra-curricular activities such as sport or music outside of school hours. Many families also opt to send their children into formal education for the senior years of schooling, especially if students want to complete their senior secondary certificate. Children can also interact with their local community in a real-world context, and direct and extended family.

7. WHERE SHOULD PARENTS WHO ARE THINKING ABOUT HOME SCHOOLING BEGIN?

• Home Education Network Victoria – the Home Education Network Inc. (HEN) is the largest alternative education support group in Victoria.

When considering home schooling, you need to find out about how to develop a curriculum and also the legal requirements.

• SHEN – Sydney Home Education Network and Shen Facebook Group – for Sydney families looking for home school events and connection.

Homeschooling Downunder’s FAQ page - www. homeschoolingdownunder.com/how-to-starthomeschooling is a great place to start, with answers to many commonly asked questions. HEA also has an extensive FAQ section.

• Home Based Learning Network Western Australia – HBLN – the Home-Based Learning Network (HBLN) is for home-based learners in Western Australia.

The consensus is that home schooling should be different from school. Parents should teach responsively, using their child’s cues and interests to guide their study. As children grow older, they develop better reasoning skills. They may be able to take in certain information better at a different stage than when it appears in the school curriculum. Children can also develop their individual personality and unique interests without succumbing to peer pressure. Home schooling should encourage children to pursue their strengths and overcome their weaknesses.

8. CAN PARENTS TEACH, OR DO THEY NEED TO EMPLOY PROFESSIONALS? It can help if you’re a qualified teacher, but you don’t need to be to provide home education. You just need a genuine interest in and commitment to providing your child with a quality home schooling experience. If you are interested in home schooling your child, you must register with the appropriate authority in your state or territory.

9. WHAT RESOURCES ARE OUT THERE TO HELP?

• Helping develop independent thinking and learning skills, and self-management

Homeschooling Downunder offers a detailed list of resources, to help new and established home schooling families in Australia. Some of these include:

• Increasing sociability with mixed-aged people

• My Homeschool Subscription – a virtual staffroom

for home educators, with a community forum, enrichment courses for parent teachers and other resources.

Aussie Educator also has a comprehensive list of resources on their website, including many for families with special needs children.

10. WHAT COSTS ARE INVOLVED? There are several costs to consider when looking into home schooling. Initial set up costs may include a computer, printer, internet access, an atlas, dictionary and workspace, plus stationery and art supplies. You will likely include extra-curricular activities as part of your child’s home schooling experience. Curriculum costs will vary, depending on the types of workbooks and memberships you choose to purchase. You can design your own curriculum based on a range of home school methods. Or, you can buy a custom designed option, supplemented by online programs in english, maths and science.

11. HOW ARE CHILDREN MEASURED OR MONITORED FOR LEARNING WHEN THEY’RE HOME SCHOOLED ARE THEIR REGULATIONS TO FOLLOW? There are regulations in place in all states which detail how progress is monitored and cover the extent to which a curriculum is to be followed. The requirements vary significantly from state to state. Aussie Educator has a comprehensive list of these requirements. ISSUE 20

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EDUCATION

GUIDE TO LEARNING DISABILITIES

a brief guide to

LEARNING DISABILITIES IT IS ESTIMATED THAT BETWEEN 3 AND 5 PERCENT OF THE STUDENT POPULATION IN AUSTRALIA MAY HAVE A LEARNING DISABILITY – A DISORDER WHICH INHIBITS A CHILD’S ABILITY TO PROCESS AND RETAIN INFORMATION. THE DIFFERENT TYPES OF LEARNING DISABILITIES CAN VARY DRAMATICALLY, AND CHILDREN CAN HAVE JUST ONE OR A CLUSTER OF DIFFERENT DISORDERS AFFECTING THEM IN THE CLASSROOM. Because of the wide variations, learning disorders are sometimes difficult to pick up and children can often be labelled lazy, careless or inattentive. There are some common warning signs to look out for however at different ages of development. Do remember that many children may experience some difficulties in learning without having a learning disorder and everyone learns at a different pace; the time for concern is when there is a consistent pattern of unevenness in your child’s ability.

• Immature handwriting • Trouble learning basic maths concepts • Inconsistency between verbal and written skills

Ages 10-13 • Poor handwriting legibility

Dyspraxia

• Poor reading fluency

This is defined as a development coordination disorder and a child with dyspraxia may experience difficulty with fine motor skills (writing, cutting etc.) as well as gross motor skills like running and jumping.

• Slow writing speed and lack of detail in writing • Poor organisational skills • Difficulties reading and interpreting maps, charts and graphs • Hard to do mental maths

Attention disorders

THE MOST COMMON DISORDERS AFFECTING A CHILD’S ABILITY TO READ, WRITE AND DO MATHS ARE:

While ADHD is not officially considered a learning disability, a child with this diagnosis will often experience difficulties in the classroom such as the inability to stay on task and focus, problems sitting still, staying organised, following instructions etc.

Dyslexia

Pre-school age

Dyslexia is the most well-known and common learning disability affecting a student’s ability to read and comprehend a text. According to the Australian Dyslexia Association, dyslexia and reading difficulties are experienced on a continuum from mild to severe and no two are alike. The central difficulty for a student with dyslexia is to convert letter symbols to their correct sound (decode) and convert sounds to their correct written symbol (spell). Students with dyslexia may also struggle with fluency, spelling, general comprehension and more.

• Difficulty learning the alphabet, colours, shapes, numbers, days of the week etc.

Dysgraphia

SOME RED FLAGS:

• Finds it hard to learn routines and follow instructions • Slow and inaccurate word recognition • Limited spoken vocabulary • Difficulty developing the age appropriate fine motor skills for writing, colouring, doing up buttons etc. (without any contributing physical disability) • Problems pronouncing words or trouble finding the right words

Ages 5-9 • Consistently misspelling words and frequent written errors • Difficulty with learning basic maths concepts • Poor reading comprehension • Writing is slow and laborious

OTHER DISORDERS THAT MAY AFFECT LEARNING IN THE CLASSROOM INCLUDE:

Dysgraphia is defined as a persistent difficulty with written expression, handwriting and/or spelling. There can be issues with the mechanical aspects of writing causing it to be a tiring, difficult process for the student. Dysgraphia can also present as difficulty with written expression disrupting the ability to organise thoughts coherently on paper. It may also cause students to struggle with basic sentence structure and grammatical awareness.

Dycalculia According to Auspeld (auspled.org.au) children with dyscalculia have trouble understanding numbers, learning how to manipulate numbers, learning mathematical facts, and a number of other related difficulties. Students with maths disorders may find it hard to do basic number calculations or they may have difficulty with concepts like time and measurement.

AUDITORY AND VISUAL PROCESSING DISORDERS: Auditory processing disorder If a child is unable to distinguish subtle differences in sound this can impact their ability to read, write and spell and process instructions.

Visual processing disorder Issues include missing subtle differences in shapes, reversing letters or numbers, skipping words, skipping lines, or having problems with eye–hand coordination.

What should you do if you think your child has a problem? Because of their nature, potential learning issues will most likely be picked up by school. If you suspect that your child has an issue and their teacher hasn’t mentioned anything, start the ball rolling with a conversation with them. The school may carry out some informal testing or you can request a formal assessment to identify any problem areas. Alternatively you can talk to a developmental paediatrician or contact an organisation such as AUSPELD (auspled.org.au) who are based in each Australian state. If a specific disorder is identified the school will be able implement the appropriate accommodations to help your child succeed in the classroom. Organisations such as SPELD can also offer ongoing support as well as assessments. ISSUE 20

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Freeze LUNCH ahead BOX

IDEAS

Anything that saves us time in the morning gets our vote! Here are some simple lunch box fillers that can be made ahead of time, frozen and defrosted, saving you time and energy in the morning rush to get everyone out the door.

EDUCATION

SCHOOL LUNCHBOX IDEAS

NO BAKE MUESLI BARS 1 cup pitted dates 1/4 cup maple syrup or honey 1/4 cup peanut butter or almond butter 1 cup of roughly chopped almonds 1 1/2 cups of rolled oats You can also add chocolate chips, chopped dried fruit, seeds, other nuts, dried banana etc. to taste (all optional). Whizz dates through a food processor and add to oats and almonds. Warm honey/syrup with peanut butter in a small saucepan then pour over the oat mix. Mix thoroughly. Transfer to a baking dish lined with greaseproof paper. Press down firmly. Cover with plastic wrap and refrigerate for 20 minutes. Cut into individual bars to wrap and freeze.

EGG MUFFINS This recipe uses ham, cheese and capsicum but you can throw in whatever you want according to your childâ&#x20AC;&#x2122;s tastes. 12 eggs 3/4 cup of milk Chopped ham Shredded cheese Chopped capsicum Salt Pepper

DATE AND COCONUT BALLS

MINI PIZZA BITES

TO MAKE:

No baking is needed here making the whole process even easier!

Pizza base (cheat and buy ready-made and use a cookie cutter to cut out small rounds)

1 cup of pitted dates 1/2 cup of desiccated coconut 2 teaspoons of cocoa powder 2 teaspoons of coconut oil 1/4 cup pumpkin seeds or other mixed seeds (optional)

Tomato puree or passata Shredded cheese (cheddar or mozzarella) Toppings of your choice

Whisk together the eggs with milk, salt and pepper. Add in your ham, cheese or other ingredients of choice. Divide mixture into greased muffin tin or lined with silicon liners. Cook in 190oC oven for around 20-25 minutes.

Roughly chop the dates then blend all the ingredients in a food processor or with a stick blender. Form small balls and freeze or refrigerate.

Cut out small rounds of pizza base and place in a muffin tray. Add a teaspoon of tomato puree to each base. Add toppings and cheese. Cook on 180oC for around 10-15 minutes.

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Educational resources and websites to support your child's learning journey Dive down the Internet rabbit hole, and you will find so many educational resources available to help your child learn. It can be hard to know where to start though. We’ve gathered some of our favourites and grouped them into learning areas, for you to begin to explore.

GENERAL TES This website offers free special needs learning activities, including games, lesson plans for gifted children, ADHD resources and Asperger’s syndrome activities. www.tes.com/en-au/teaching-resources/hub/ whole-school/special-educational-needs

ABC Education One of the resources from the HEN website is ABC Education. This website directs you to thousands of free ABC educational resources for primary and secondary students, including videos, games, apps and programs. education.abc.net.au

Learning Links

The Home Education Network website is based on home schooling but offers a variety of resources that support any at-home learning.

Learning Links works in collaboration with schools, early childhood settings and parents to help children with learning disabilities and difficulties. These include conditions such as ADHD, high functioning Autism, Dyslexia, Dyscalculia, fine and gross motor delays and speech and language delays. Learning Links raises funds through donations, partnerships and grants to offer its services at subsidised rates to children and young people from disadvantaged backgrounds. They also deliver a wide range of free programs and services focussed on improving children’s literacy, numeracy and emotional well-being in schools across Sydney and in other parts of NSW, Victoria and Tasmania.

home-ed.vic.edu.au

www.learninglinks.org.au

Aussie Educator This website acts as a special education portal, with a huge collection of links to sites, other resources, forums and support groups. It suggests resources for specific disabilities from a range of Australian and International sites. www.aussieeducator.org.au

Home Education Network

SOCIAL SKILLS Autism Awareness

The Autism Awareness website is a place to find information about teaching children with autism, how to set up spaces in the home for a child with autism and where to find books and apps helpful in educating children with autism. It links to a comprehensive range of websites with further useful information and resources. www.autismawareness.com.au/resources/ educational-resources

Inclusive Class

The Inclusive Class is a collection of blog posts, articles and other resources to promote a classroom or home learning environment of inclusion. Its rich material helps parents and teachers create a more supportive school environment for their students with special needs. www.theinclusiveclass.com

My Diffability

EDUCATION

ONLINE RESOURCES

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Parents and special education teachers often have difficulty finding new ways to inspire a love for learning in children with learning disabilities. The Internet has become one of the best resources for discovering exciting and entertaining activities for children. Educational websites assist children with learning disabilities master basic skills in literacy and numeracy, as well as more advanced concepts. This website directs users to 12 sites that are useful for children with a range of learning disabilities, including dyslexia, dysgraphia, ADHD, and visual motor deficit. www.special-education-degree.net/top-12websites-children-learning-disabilities/

Storyline Online

Published by the SAG-AFTRA Foundation, this is an excellent resource for children with learning disabilities like dyslexia. This website records free videos of narrators reading children’s books aloud. Students develop their literacy skills by following along with the text as they listen. www.storylineonline.net

Reading Rockets

Reading Rockets is an award-winning website devoted to providing researchbased activities that help struggling readers. There is an extensive collection of lessons centred on fluency, oral language, phonemic awareness, reading comprehension, and other literacy skills. There are also themed booklists to get children excited about reading. www.readingrockets.org/atoz

Skwirk

Skwirk is an online destination and learning environment for students to use as a resource tool for homework and assignments. Hosting over 18,000 resources, Skwirk is used in Australia and all around the world. It covers english, maths, science, history, geography and commerce from Foundation to Year 10, and allows you to access work from different levels as needed to modify learning for your child’s individual needs. www.skwirk.com.au

AUSPELD

Do2learn is one website from the Autism Awareness list. It’s a popular site, providing users with thousands of free pages of social skills and behavioural regulation activities and guidance, learning songs and games and communication cards.

Children and adolescents with special needs (including Autism Spectrum Disorder) often learn more easily when supported with visual strategies including books and videos. The website My Diffability provides many fantastic books and DVDs to support learning, in particular, social skills. The resource collection for social skills and blog both have helpful information for special needs families.

AUSPELD provides access to a number of excellent resources for teachers dealing with learning disabilities, students with learning disabilities and parents of struggling students. They also represent (and provide links to) all state and territory SPELD associations that provide advisory services, assessment and resources for people with learning difference.

www.do2learn.com

www.mydiffability.com.au

auspeld.org.au

Do2learn

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Assistive, interactive & sensory technology Sensory Rooms When it comes to multisensory environments, we’re your one-stop-shop! We design and install, and provide training, support and clinical advice. Our spaces facilitate exploration, well-being, choice, autonomy, and skill development.

Speech Case for iPad iOS users - add a Speech Case to your iPad and experience AAC the Tobii Dynavox way!

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Equipped with extra-loud speakers, an ergonomic and durable design, and more, the Speech Case provides a reliable communication solution for iOS users by transforming your iPad into a true AAC device. Head to linkassistive.com for more information.

Cosmo Cosmo is an award-winning interactive therapy and learning system which features 14+ activities designed by teachers and occupational, physical and speech & language therapists. Use Cosmo to develop joint attention, turn taking, motor skills, communication, waiting, sequencing and more! Available in sets of 2, 4 or 6 Cosmo devices. Contact us for a free two-week trial!

The complete literacy toolkit for developing and struggling readers and writers! From planning, to writing, to proofing – Clicker includes all the tools your students need to succeed. Features: children’s voices, single, multiple and site license options, ability to easily export data and schoolwork, compatible with other access methods including switch and eye gaze.

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WINTER 2019

www.illumereading.com.au

Music therapy is a wonderful addition to any classroom! MTA have a vast array of musical instruments to let your classroom hum with melody! Check this out for your classroom – a large 17-piece percussion set containing – a tambourine, headless tambourine, xylophone with two mallets, double tone block with mallet, tone block with mallet, handle castanet, pair of hand bells, triangle with striker, pair of plastic maracas, pair of bells, pair of cymbals, jingle stick, handle bells, and 4 pairs of plastic castanets. Supplied in a carry case so children and teachers can transport the instruments anywhere!

There are so many benefits of the Visual Edge Slant Board that we can’t choose just one! It is designed to provide the ideal working surface. It has a convenient book catch at the bottom and holds any size book whilst the new Dual Paper Clips at the top hold individual papers securely. The board surface is also Dry Erase and Magnetic. The list of benefits is impressive! Better visual tracking – great for vision impaired students; improved posture; reduced eye fatigue; better penmanship; less wrist cramping; better comprehension; reduced heart rate and lower blood pressure.

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Illume Reading is a suite of resources designed to teach reading to students of all ages and abilities. Illume recognises that the way each student learns is unique and therefore the approaches and resources used can be adapted to meet the needs and interests of all learners. Illume Reading incorporates the teaching of both sight words and phonics, as well as other important skills including reading comprehension, all through the use of engaging and personalised resources. Everything you need is included so it’s perfect for both busy parents and teachers. Stage A Beginning Pack RRP $199.00

VISUAL EDGE SLANT BOARDS

ILLUME READING RESOURCES

Beyblades are a variety of ‘cool’ customisable spinning tops, available in many shapes, colours and sizes. They are an inclusive and fun way to help build fine motor skills, turntaking, patience and develop social connections. And if your child is a visual sensory seeker, the spinning metal top can be a great way to help regulate at home, in the classroom or on the run. Available from Target, and most department and toy stores. Beyblade Starter Pack RRP $24.95 www.sourcekids.com.au

EASY GRIP SQUEEZY SCISSORS We love these sensational scissors for our kids with low muscle tone to develop fine motor skills! Easy Grip Scissors are high quality, very lightweight and have a continuous loop plastic handle. Operated by squeezing gently using thumb and fingers, or fingers and palm of hand. Scissors automatically reopen when pressure is released. RRP $9.50 www.mydiffability.com.au/ products/easy-grip-squeezy-scissors

THERAPUTTY Kids love the sensory input that squishing and moulding putty gives. This Theraputty for hand exercises is designed to improve fine motor skills. It’s also great for stress relief and can be helpful when kids are upset, need to concentrate or have the urge to fidget. A great resource to have in any classroom!

TEACHING KIDS TO MANAGE ANXIETY Kids today are growing up in a fast-paced world where information and opportunity overload can be overwhelming and cause for sensory seeking and regulation strategies. Teaching Kids to Manage Anxiety offers parents and teachers simple strategies that can make a massive difference to a child’s ability to cope. Based on many years of clinical experience as an occupational therapist, Deb Hopper has been using her Just Right KidsTM Model to teach children to communicate and manage their stress and anxiety. Deb provides simple and practical strategies that help children and parents alike.

RRP $14.50 www.skillbuilders.com.au

JARI STOOL The ‘Jari’ is the active stool for seated movement! With its rotating convex base Jari forms one leg of a stable tripod, your own legs provide the other two parts. This means you are constantly flexing, adjusting and moving; which is the ideal way to stay focused and concentrate! RRP $144.95 www.sensorycalm.com.au

EMPOWERED KIDS SENSORY BLACKOUT TENT The ‘Empowered Kids’ Sensory Blackout Tent is an ideal resource to use in classrooms as a self-regulation tool. The black sensory tent reduces sensory input and provides a safe and non-stimulating space for children to reset and refocus. A great addition to any classroom!

RRP $25.00 www.lifeskills4kids.com.au/ teaching-kids-book

RRP $44.00 www.empoweredkidsot.com.au

LEGO

TRAINING2S CALMING RESOURCES SET OF 2 Kids who find it challenging to sit still and concentrate will benefit greatly from Training 2’s Calming Resources pack! This great resource includes the Calming Shoulder Pad and The Calming Small Lap Pad - two great items to help relax and calm children and a tool to assist with concentration. Enter our Comp Corner (on page 79) this issue to win this fantastic pack!

LEARNING CAN BE FUN!

RRP $109.95

We love that Learning Can Be Fun’s mission is to ‘Design new products to inspire, encourage and create this generation of young minds!’ Popular items such as flash cards, posters and the placemats are a big hit with all kids! With their bright and engaging colours, they are a winning formula to keep our kids minds intrigued!

www.teaching.com.au/product/PK2121K

Staring from RRP $5.00 www.learningcanbefun.com.au

LEGO is used throughout many schools to initiate, engage and develop skills in children with additional needs. Used for fine and gross motor skills, vision and speech development – LEGO has many benefits, as well as letting your imagination get to work! These creator kids from Bricks n Fun (an authorised LEGO Retailer) are a huge hit! Lego Braille Bricks are in the pipeline too with expected release for 2020 – we can’t wait for those to add to our collection! Creator kids starting from RRP $19.95 http://www.bricksnfun.com.au

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SOURCE KIDS

VEHICLE MODIFICATIONS

YOUR TICKET TO FREEDOM

STARTS WITH YOUR CAR BY PETER MILLER, BRAZIER MOBILITY

WE ALL NEED TO GET OUT OF THE HOUSE; IT’S A FUNDAMENTAL FREEDOM AND A BASIC RIGHT. BUT WHEN YOU HAVE A CHILD PASSENGER WITH A DISABILITY IT CAN GET COMPLICATED. SO HERE’S THE GOOD NEWS…..THERE ARE LITERALLY HUNDREDS OF OPTIONS OUT THERE TO HELP GET YOU AND YOUR PASSENGERS WHEREVER THEY NEED TO BE – IN YOUR OWN CAR WITH THE LEAST AMOUNT OF HASSLE. “HOW?”, I HEAR YOU ASK. READ ON! 44

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www.sourcekids.com.au

LET’S START WITH YOUR CAR, WAGON OR VAN. IS IT RELIABLE AND WELL MAINTAINED? IS IT LARGE ENOUGH TO CARRY YOUR PASSENGERS AND ALL OF THEIR GEAR COMFORTABLY? WAS THAT A “YES” I HEARD? EXCELLENT, YOU’RE OFF TO A GOOD START! STARTING WITH THE RIGHT VEHICLE IS KEY TO HAPPY TRAVELLING WITH A PASSENGER THAT HAS A DISABILITY. YOUR CAR IS YOUR LIFELINE TO THE OUTSIDE WORLD, SO LOOK AFTER IT!

“ REGULAR MAINTENANCE IS THE KEY TO NOT HAVING TO WAIT FOR AN ACCESS CAB TO TAKE EVERYONE HOME WHILE YOUR CAR IS TOWED TO THE MECHANICS.” Now you’ve got your vehicle sorted, let’s take a look at the things you might need to help you get out and about safely.

CHALLENGE #1: GETTING PASSENGERS IN AND OUT A passenger with a disability will often need help getting in and out of the car. For some it might be a simple matter of a grab point or slide plate to transfer from a chair to the car. For others it might be a bit more complicated.

“The golden rule is this….look after yourself whilst you’re looking after others!” It’s hard to care for others if you injure yourself in the process. If you’re not sure, have a think about whether your passenger loading techniques would be acceptable in a workplace. If they wouldn’t, there’s a good chance you might need some extra help.

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HERE ARE JUST SOME OF THE SOLUTIONS AVAILABLE TO HELP GET YOUR PASSENGER IN AND OUT OF THE CAR: Slide transfer plates and grab rails – can be simply installed to give a bit of extra help to passengers wanting to get into the vehicle themselves. They’re pretty unobtrusive and they won’t break the bank.

Electrical transfer plates – fold down from the passenger side of the car and can be raised or lowered to help get in and out of the car. These have the added benefit of helping passengers enter or exit the vehicle from/to a standing position, even if they do not have a wheelchair. Side steps – can be manually folded out or automatically deployed to assist passengers who are still mobile but need a little help getting into the car.

Ramps and lifters – are usually installed on larger vehicles and used when a wheelchair passenger is likely to be travelling in the vehicle while still in their chair. Location of ramps and lifters will depend on the vehicle and will usually be deployed from under the body of the vehicle (underfloor) or from the inside of the vehicle (internal). Typically, an underfloor solution will be more expensive due the compact technology it relies upon – but it’s a great solution when space is an issue. Just remember, if your vehicle is going to be travelling over rough, muddy ground or in constantly wet conditions an underfloor ramp or lifter will be at more risk of damage.

Personal lifters – work by helping passengers transfer from their wheelchair to the front of the car. A sling is placed under the passenger when they are in their wheelchair and the hoist then lifts them out of the chair. They can then ‘swing’ into the car and be lowered to the vehicle seat. If you have a heavy passenger, a personal lifter is an ideal solution to help save your back!

Swivel/lowering seats – are amazing! These genius bits of kit turn a bucket seat into a seat that swivels, turns, lowers and raises. They’re programmable to suit your vehicle and they make transferring in and out so, so easy. If your passenger is able to transfer in and out of the vehicle seat when it’s outside the car then this is a terrific solution for you! These are available with both electric and manual options. Only the electrical seats have a raising/lowering option though.

CHALLENGE #2: STORING ALL THE STUFF Travelling with equipment means it needs to be loaded safely and travel safely. Motorised chairs and scooters can be heavy, and you can break your back loading these in and out every day. But there are solutions! If you have a wagon or a hatchback then most people choose a scooter/ wheelchair hoist to pick up their wheels and load it into the back. These units look like a mini crane to lift, lower and swing things into place. If you’re looking at these then you need to be sure you have room for your equipment, plus the hoist, as well as working room for the hoist to do its job. Depending on your equipment and the type of vehicle you have, you may also need to strengthen the floor so it doesn’t collapse under the weight of your equipment. Access to your spare wheel is also something to consider when installing and using these hoists. An alternative to an equipment hoist is an external tow bar lifter. Think of these like a mechanical bike rack that attaches to a medium duty or heavyduty tow hitch. Loading a wheelchair or scooter is a simple matter of docking the device at ground level and raising it off the ground before you drive away. The advantage of these devices is that you can still use your car’s storage and you’re not restricted to using it for a wagon or hatchback. Just remember that anything you store outside your car will be exposed to the elements – so a quick cleanup at the end of each trip might be needed! Most importantly, when you’re travelling with equipment in your vehicle you must think about safety. 46

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“ A handy rule of thumb is that a loose object in your car will provide the force of 20 times (or more) of its own weight in a crash.” So even a 40kg scooter can deliver 800kg or more of force in a crash – and that’s deadly. There are plenty of options to secure your stuff in the car so please, be safe and lock it down with something more than a couple of “Octopus Straps”.

CHALLENGE #3: MANAGING BEHAVIOURS Not every passenger is happy to sit quietly in the back of the car and that’s where you may need to take steps to make it safe for both driver and all passengers in the vehicle, as well as to protect the vehicle itself.

Passenger screens – separate drivers and/or front passengers from

being distracted by passengers in the rear of the car. These polycarbonate screens run from floor to ceiling of your car to prevent contact from behind the front seat. A well-fitted screen will be strong (usually steel framed) and have virtually no gaps for prying fingers that can pull the screen loose. Remember, screens need to be bolted to your vehicle so if you’re precious about having a few extra holes around the place then this may not be the option for you.

Polycarbonate window barriers – are a useful way to prevent breakages. They usually consist of a custom steel frame bolted to your vehicle to hold the screen in place. Once again, you’ll get a few free holes with this solution so you need to be prepared for this. Harnesses – can help secure a passenger to keep them safe in their seating position and prevent them from roaming around the car.

ONE LAST OPTION! Sometimes it can be easier to purchase a Wheelchair Accessible Vehicle so your passenger can simply wheel in and out when you travel. These come in small, medium and large sizes, depending on how many other passengers you need to travel with. Only certain vehicles are suitable for conversion so it’s best that you talk with your vehicle modifier before you go too far.

SO, THERE YOU HAVE IT! REMEMBER THAT EACH PASSENGER WILL HAVE THEIR OWN INDIVIDUAL TRAVEL NEEDS AND THESE TOO WILL VARY DEPENDING ON THE VEHICLE YOU HAVE. BEST ADVICE IS TO DISCUSS YOUR NEEDS WITH YOUR HEALTH PROFESSIONAL, AS WELL AS YOUR LOCAL VEHICLE MODIFIER. Price is certainly something you need to consider but beware, cheap components are creeping into the market and some of these have proven unreliable and difficult to maintain. If your budget allows for known and trusted brands, it’s worthwhile buying equipment you know will be reliable. Remember too, that some modifications need to be engineer certified and passed by your state authorities. Requirements vary between state and territories; your local vehicle modifier should be able to advise you on what to do here. And finally, if you are having your vehicle modified, make sure that anything that uses motors, straps or hydraulics needs to be inspected and regularly serviced at the same time as you have your vehicle serviced. Brazier Mobility has been providing quality vehicle modification solutions for people from all over Australia with disabilities for over 30 years. They perform all types of installations and conversions, large or small, to all types of vehicles and buses, even farming equipment! They love the work they do and they are a proud supporter of Variety Australia for over 20 years. Visit braziermobility.com.au for more info. www.sourcekids.com.au

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SOURCE KIDS

VEHICLE PRODUCT REVIEW

Great products to keep our ‘well-travelled’ travelers happy!

EARMUFFS

STAY PUT RESTRAINTS

We spend a lot of time in the car with our kids, transporting them from school, various therapy appointments and to their social activities! We need to ensure they are safe, so if you have a little Houdini that loves to unbuckle their seatbelt – this product is a must! Authorised drivers can prevent unbuckling of up to 3 seat belt via a dash mounted control unit. A key prevents unauthorised use. Please contact the team for your personal quote: www.stayputrestraints.com.aucontact.html

With a range especially designed for children, including babies, there will be a product to suit each child in the car in this collection! Ems For Kids Earmuffs are designed to protect all ears, as well as providing a reduced sensory element to sometimes loud journeys! Ems for Kids now include an audio range too, so perfect for individual listening! Starting from RRP $19.99 https://www.earmuffsforkids.com.au

THE KOOSHION Meet Louisa, the founder of Kooshy Kids. Louisa wanted to provide a one-stop-shop for families with innovative travel products designed to take the stress out of family travel. We think that there is something for everyone in this collection of super travel products! We think you’ll love them too and have included one of our faves! The Kooshy Kids Kooshion is designed to create a flat, flexible space between car seats for you and your children to sit back and relax on. RRP $59.95 https://kooshykids.com.au 48

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www.sourcekids.com.au

BACKSEAT CARMA

MAGNA CARRY

This product is such a sanity-saver, we’ve included it again for our Winter issue! The Backseat Carma is a product that allows the driver to do what they do best – drive! It is designed to keep children out of each other’s reach, block views of one another, which equals less distraction for the driver and a much safer car journey for all! RRP $149.00 https://backseatcarma.com

(MAGNETIC GAME)

Let your imagination run wild with these kits from Tiger Tribe! Perfect for the car journey, the Magna Carry helps develop imagination and ﬁne motor skills, all the while encouraging independent play. Each set comes with two sheets of press out magnets and is super portable. Choose from many of their great designs. RRP $25.00 www.tigertribe.com.au

ZIPUP ORGANISER WITH TABLET HOLDER Never pick up a dropped iPad or tablet in the car again! This deluxe zip up organiser with tablet holder features a removable tablet/iPad holder, which is perfect for keeping your child entertained on many a car trip! RRP $49.99 http://store.infasecure.com.au/ product/new

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SOURCE KIDS

BY SAM PAIOR, THE GROWING SPACE

NDIS REVIEW

HOW TO BLITZ YOUR NDIS REVIEW THERE’S NOTHING QUITE LIKE THE STOMACH KNOTTING STRESS OF KNOWING YOUR CHILD’S NDIS PLAN IS DUE FOR REVIEW. Will she get a good plan? Will it be cut? Will we get it before the old one expires? What happens to the equipment we haven’t got yet? These questions can flood (and hurt) your brain and the truth is, that noone can predict with any accuracy the right answers for your little one! But, you can improve your chances of getting a decent plan that meets your child’s needs by following these five steps.

1. GOALS:

3. ASSISTIVE TECHNOLOGY:

Work hard to make sure you have covered everything in your child’s goals. If your child needs a support or service that isn’t covered by the goals, you’re unlikely to get the needed funding. The NDIS system has room for up to seven goals, but usually three to five should be enough. Key words you might want to include are “increasing independence”, “building skills”, “making friends” etc. Always provide a copy of your child’s goals IN WRITING to your LAC or Planner. If there is something slightly unusual you want funded in the plan, make dead sure you have a specific goal that covers that need. E.g: “I want the equipment and supports I need to be able to cook nutritious meals independently and safely without help.” Might be a good goal for a young adult wanting an all-in-one cooking device as they prepare to move out of home.

2. REPORTS: Reports from your child’s therapists can be key to providing the evidence needed for ongoing funding, but if those reports are 20 pages long, or don’t include useful information about the progress your child made over the past plan, then they’re likely to be a waste of your energy and money. Direct your therapists to check out this awesome guide from VALID which gives therapists a guide on how to write a report that will help www.valid.org.au/10-steps-excellentndis-therapy-reports. Your therapy reports should not focus on what the therapist did, as much as what were the goals achieved. Your reports will need to tread a fine line between reporting progress (if there’s no progress made, why would NDIS keep funding that therapy?) and outlining the need for further funding. 50

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Cheaper, low risk items, like a cup holder on a wheelchair, a time timer, moulded spoon for an older child, or other assistive technology can usually be purchased from core/ consumable funding. If your child requires these smaller items, bring a list to your review meeting (even better if it’s in an email from your OT!) and ask for flexible Assistive Technology funding. And if you need larger, more specialised equipment, like a new wheelchair or stander, make sure to bring those recommendations, prescriptions (on an NDIS form!) and quotes from your allied health professional to your planning meeting to save delays.

4. MONEY MANAGEMENT: Make sure you know exactly what money management you want in your new plan, and make sure to ask for it, IN WRITING. Self-management will always give you the greatest flexibility in how you can use the funds, but plan management can work well for many too. Agency management is usually too restrictive for most families. Plan management offers some flexibilities, but you won’t be able to use services that charge above the rates in the NDIS Price Guide.

EXTRA TIPS FOR FAMILIES WITH YOUNG CHILDREN 1. SUPPORT WORKERS FOR YOUNG CHILDREN: Children under the age of seven generally do not receive “Core” supports for support worker assistance, but there are exceptions for those with extraordinary support needs. The NDIS works on the assumption that every young child needs parental support 24/7, so young children with disability should also be cared for by parents.

2. AFTER-SCHOOL AND VACATION CARE: NDIS generally won’t fund these for primary school aged children so that parents can work, as all primary aged kids need supervision after school. If your child has been excluded from attending your local after-school care, make sure you bring a letter denying them access, and proving your need for extra supports. My last tip is to say “thank you” to your planner/LAC. Sometimes it can be tough to feel thankful at the end of a meeting where you feel utterly exposed and sometimes judged, but I always suggest you thank your planner or LAC at the end of your planning meeting. Find something (or many things) that they did well, and let them know. The NDIS is a pretty new, huge, beast of a program, and nearly everyone is pretty overwhelmed and overworked. Planners and LACs tend to only hear complaints, so if you have a genuine compliment to share, do it.

5. CARER STATEMENT: Always bring along a written carer statement that outlines your abilities and inabilities to meet your child’s disability support needs. If you are caring for more than one person, make sure you outline this, as well as your own disability or significant health concerns. Keep it to less than a page – half a page is usually best.

For more information about making the most of your NDIS, check out The Growing Space’s ever growing library of free and subscription based resources written for carers and people with disability at www.thegrowingspace.com.au/library Subscriptions to this service can be claimed from Self and Plan Managed NDIS plans from Core or CB support budgets. www.sourcekids.com.au

DISABILITY

EXPO BRISBANE BRISBANE CONVENTION AND EXHIBITION CENTRE

5-6 JULY â&#x20AC;¢ 2019

FREE ENTRY BRISBANE'S MUST-ATTEND DISABILITY EXPO

REGIST ER ONLINE NOW FOR F REE ENT RY!

Following a successful expo in Brisbane in 2018, we are bringing this event back in 2019 bigger and better! This two-day event is designed to be a mix of information, products, services and speakers with a welcome dose of entertainment and a host of family-friendly activities included!

Visit www.sourcekids.com.au/expo for full details and follow our Facebook event page to keep updated!

ASTRIS PME NOW OPEN IN BRISBANE We have a huge range of trial equipment available so if you would like to make an appointment with one of our Specialist Consultants, arrange a trial, or enquire about any of the products and services we offer, please call us on 07 3556 7133.

astris.-pme.com.au

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WINTER 2019

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SYDNEY • YOUNG • CANBERRA • MELBOURNE • BRISBANE

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FAMILY PROFILE

FLANNERY FAMILY

Flannery MEET THE

FAMILY

OUR AMAZING, STRONG AND LOVING FAMILY CONSISTS OF FIVE OF US; MYSELF, LOUISE MUM OF FOUR BEAUTIFUL CHILDREN. MY ELDEST BOY JORDAN (19), MY DAUGHTER IZZY (17), MY YOUNGEST SON TEDDY (7) AND MY LITTLE GIRL CHARLI (3).

WHERE DO YOU LIVE? We live on the south side of Brisbane in a very nice little townhouse. However, my youngest Charli and I tend to live at the Queensland Children’s Hospital the majority the time due to Charli’s complex medical condition.

WHAT IS YOUR CHILD’S DIAGNOSIS AND HOW DOES IT AFFECT THEM? Charli suffers from a rare genetic neurodegenerative condition known as ‘Pontocerebellar Hypoplasia Type 1b’ (PCH1b). PCH1b is a severe recessive neurological disorder including spinal motor neuron, meaning Charli suffers from involuntary movements, hypotonia (no head or trunk control), muscle weakness, nystagmus, congenital hip dislocation, respiratory insufficiency, aspiration, neurological seizures (lasting up to 3 hours), hyperreflexia. She is nonverbal and will never attain the ability to crawl, sit or walk etc.

WHAT LED TO THE DIAGNOSIS? Charli had her first chest infection when she was 10 weeks old. A paediatrician at the hospital noticed Charli wasn’t tracking with her eyes and was still extremely floppy. As the months went by no milestones were being met so further investigations continued. Eventually, genetic testing was performed and showed that Charli had a uniparental duplication of chromosome 9. Further genetic testing was done which led to the diagnosis of PCH1B. This was also confirmed via an MRI. Charli is the only child in the world who has received this condition from one parent. Normally both parents have to be carriers in order to pass on the gene. Due to Charli receiving a uniparental duplication from mum and none from dad it meant she got 2 “bad identical copies” of chromosome 9, which is what carried the PCH1b gene.

IS YOUR CHILD IN SCHOOL? Charli does not attend school. She is supported at 54

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home by me. She is unable to support herself in any way shape or form.

WHAT THERAPIES DOES YOUR CHILD DO? DO YOU HAVE ANY TIPS/TRICKS FOR FITTING THERAPY INTO YOUR LIFE? Charli loves “informal” therapy; she enjoys floating and relaxing in the pool, rocking out to some music therapy is another favourite along with getting messy with paint in art therapy. We tend to fit these activities into our everyday life when and where we can and when Charli is up to it. Due to the regression in Charli’s condition, Charli attending any sort of schooling, formal therapy, or anything that uses up her energy is difficult. It can cause Charli to go downhill with the stress and pressure on her little body leading to numerous seizures which then lead to further complications. Charli’s teams have agreed that formal therapies will not benefit her in the future; they believe it is best for her to reserve her energy and time for quality time with the family.

WHAT CURRENT GOALS DOES YOUR CHILD OR YOUR FAMILY HAVE? We are unsure of the time we have to spend together as a family so we have one goal and that www.sourcekids.com.au

Lastly, don’t be afraid to ADVOCATE, ADVOCATE, ADVOCATE for your child.

WHAT DO YOU DO FOR YOU TIME? I don’t get much ‘me’ time, but when I do it is usually late at night after Charli is settled and is fast asleep. I like to just sit down and hang out with my other kids, relax and find something on Netflix. We just enjoy laughing and joking. My eldest daughter and I will do little pamper sessions of facials on each other. Just the simple things I used to take for granted.

WHAT ARE YOUR HOPES FOR THE FUTURE? is to spend as much quality family time together as we possibly can and to make as many great, fun and exciting memories imaginable. Keeping Charli comfortable and happy and at home is all we can ask for so we are grateful for each day we have.

WHAT ADVICE WOULD YOU SHARE WITH SOMEONE STARTING OUT ON THE SPECIAL NEEDS JOURNEY?

WE WOULD NEVER MANAGE WITHOUT THE FOLLOWING…

Don’t compare your child’s journey to others and forget about “typical” milestones. Our precious, rare little gems write their own stories and create their own unique milestones.

• Bingo Hoggie – Charli would be lost without her wheels

TRY TO LIVE IN THE MOMENT AND TAKE EVERY DAY AS IT COMES.

Find some support groups, whether it be online or in person. I have made many friendships through social media and even though there are many people I have never met in person, they become family and the shoulder you need to cry on, talk to and bounce ideas off.

Ideally, I hope for a treatment to slow down the progression of PCH1B so my little girl can live a longer, happy, comfortable life. But, at this stage my main hope is to have fewer hospital stays and more home time, to go on more family trips/ holidays and to grasp on to as many fun memories as a family that we can.

Products we love:

• iPad – Charli is obsessed with Sesame Street so we can take it everywhere we go • Scentsy Buddies – soft cuddly animals that smell amazing

People (or businesses) we love: • Gabby Smith – Paediatric Potentials Occupational Therapist • Goodna Street Life – they have been a huge help in purchasing anything Charli has needed and they helped us purchase our care • Special Needs Solutions – the ladies are the most caring people you will ever come across • Tubie Fun – the best accessories you’ll find for your tubie child • Surreal Signs – best signage place in town, they made our car so much fun!! ISSUE 20

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CHARLIZE’S GIFT TO GENE THERAPY RESEARCH

In association with

“CMRI is globally competitive in gene therapy, with a special interest and a strong track record in liver-targeting therapies,’’ Professor Alexander said. “Currently, our expertise is in gene therapies for the liver, for which we are globally recognised, but we also work on other tissues besides liver. It is not just about the technology, it is about the patients.’’ Together Professor Alexander and Dr Lisowski want to see things work faster in Australia. “Gene therapy has the potential to cure kids right now,’’ Professor Alexander said, “ and we need to be able to conduct trials here in Australia. “Australia punches well above its weight, given only 3% of global biomedical research happens here. However, most trials are conducted overseas, and our aim is to bring overseas clinical trials to Australia as soon as possible, so we don’t have to wait two years for clinical vectors. We need a facility in this country to be able to compress a 5-7 year journey into a 2-3 year journey for children with devastating diseases. “Delivering gene therapies from bench to bedside within two years would be extremely exciting.’’

Charlize and her family meeting the gene therapy team at CMRI

WHEN JULIE GRAVINA WAS RUSHING HER YOUNG DAUGHTER TO HOSPITAL FOR A LIFE-SAVING TRANSPLANT SHE HAD A VERY SPECIAL MISSION ON HER MIND – DONATING THE DYING LIVER TO RESEARCH. “When you are told there is no treatment, no cure,’’ Julie said, “all you want to do is change things for other people, so they don’t have to go through what we’ve gone through.’’ Julie’s twins Charlize and Isaac were born with a genetic condition known as Propionic Acidemia,

which is a serious metabolic disorder. Isaac required a liver transplant when he was just two years old. Unfortunately, due to post-surgery complications, he died a short time after the transplant. When Charlize underwent her liver transplant, Julie made sure the cells went to the Gene Therapy Unit at Children’s Medical Research Institute (CMRI) in Sydney, which is led by Professor Ian Alexander. As a scientist and a clinician, he wants to get to a point where children don’t need to have a transplant and could instead use gene therapy to replace or correct a faulty gene. “This technology could translate into saving the lives of infants with life-threatening conditions,’’ Prof Alexander said. “It’s about getting cures into the clinic as soon as we can.” “We’re trying to get to a point where instead of a liver transplant in a very young infant, we can genetically repair the liver without major surgery. It’s a very exciting time to be doing gene therapy.’’

Professor Ian Alexander from Children’s Medical Research Institute 56

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Professor Alexander works with Dr Leszek Liswoski who leads the Translational Vectorology Group at Children’s Medical Research Institute. Lisowski produces the vectors to make gene therapy possible. Together they would like to establish a facility in Westmead that would manufacture vectors, so patients aren’t waiting years for them to come from overseas.

IT IS THAT EXCITEMENT THAT INSPIRES THE GRAVINA FAMILY, WHO ARE PART OF THIS YEAR’S JEANS FOR GENES CAMPAIGN WHICH STARS CHARLIZE. “I hope in Charlize’s lifetime that she will receive better treatments and possibly cures,” Julie said. “I think we’re getting there. Already, we’ve got Charlize’s liver cells in the lab at CMRI and Ian Alexander and his team are working on gene therapy for Propionic Acidemia right now, and I think that is just so exciting, given the diagnosis that our children were given, and the outcomes, it’s more than you could ever wish for.’’ “They are trying to get to the point where, instead of children with Propionic Acidemia needing a liver transplant – they’re working on gene therapy so they can either edit or replace the faulty or missing gene and the children can go ahead and have a happy , normal life, before there is damage to their heart or their brain – that’s what takes the biggest toll on their bodies. “Supporting research means so much to our family.’’ To find out more about how you can help visit jeansforgenes.org.au www.sourcekids.com.au

ISSUE 20

WINTER 2019

SOURCE KIDS

BY RACHEL WILLIAMS

GOALBALL

GOAL BALL

WHEN BROOKE CARTER STARTED PLAYING GOALBALL 11 YEARS AGO, SHE FELL IN LOVE WITH THE SPORT.

It is now played at the Paralympics, with more than 100 countries practicing the sport – particularly across Europe.

NOW SHE IS PRESIDENT OF THE VICTORIAN GOALBALL ASSOCIATION AND IS ACTIVELY WORKING TO EXPAND THE GAME INTO SCHOOLS AND GROW ITS PARTICIPATION NUMBERS SO THAT MORE BLIND OR VISION IMPAIRED PEOPLE CAN EXPERIENCE THE FUN.

“Participants tend to play goalball to learn new skills, be active and make new friends. Many of our members have made meaningful friendships through playing goalball. Others have enjoyed that opportunity to play a spot that caters for them, showing that, when given the chance, they are quite good at sport.”

Brooke, who has Retinitis Pigmentisa – which means she has partial vision, is sensitive to light, has poor depth perception, colour deficiency, no peripheral vision and night blindness – was diagnosed with her vision impairment when she was four. But it hasn’t stopped her living a life that is now somewhat consumed by goalball, a game initially started as a way to rehabilitate World War II veterans.

“Goalball is the only sport for the blind and vision impaired that is not an adapted version of a mainstream sport,” Brooke explains.

Goalball is played on a court with goals at each end spanning nine metres wide and 1.3 metres tall. Two teams of three players are in charge of defending the goals while attempting to score against their opposition. To score, teams must successfully throw the ball past the opposition’s defence and into their goals. After a ball is thrown, the defending players have 10 seconds to throw the ball back after one of them touches it.

SKILLS DEVELOPED WHEN PLAYING THE SPORT INCLUDE: • ORIENTATION • TEAM WORK • ACTIVE LISTENING • RESILIENCE

ISSUE 20

WINTER 2019

• COMMUNICATION • PROBLEM SOLVING • SOCIAL SKILLS • COLLABORATION

www.sourcekids.com.au

AND THE BALL IS MADE OF HARD RUBBERINSIDE HAS HOLES IN IT THAT ALLOW BELLS TO BE HEARD AS THE BALL MOVES.

“Whilst it is great the we now have Junior and Youth divisions, they are the hardest division to recruit members for. As a result of this, these division are slowly coming but recruitment comes in waves.”

GOALBALL IS PLAYED BOTH FOR FUN AND COMPETITIVELY. “Having only a few players on court in a small area makes it easier to control the game and move around the court safely,” she says. “In Victoria we are very passionate about providing opportunities for our members to play fun, social Goalball. Many of members complete in state and national competitions.

Perhaps the biggest challenge for those involved in the sport is actually reserved for the spectators – who must remain quiet to allow the competitors hear the ball and the position of their opponents.

“The biggest event of the year is the Australian Goalball Championships. This event is played in October each year. We will be heading to South Australia this year. We hope to enter a few Victorian teams in the competition. We are currently in the process of selecting our coaches and our team selections will follow in about a months’ time.”

“The unique combination of instincts, hearing and team communication makes the sport exciting and one of a kind,” Brooke says

Over Brooke’s journey she has been a player, coach and administrator and is relishing the challenge of her current presidency.

“All players on the court are required to wear eye shades which allows for an even playing field and adds a new level of difficulty.”

“Through these opportunities I have developed a wide range of skills and climbed my way to my current position of President,” she says.

Recruiting players for youth and junior divisions has been a challenge, but one that Brooke is determined to succeed in.

“As part of my current role, I have ambitious goals that I want to achieve. Through hard work and perseverance, I hope to grow the sport.”

The ball is made of hard rubber and has holes in it that allow bells inside to be heard as the ball moves.

“In 2011 a Junior/Youth combined division was incorporated into the Australian Goalball Championships. In 2012 we saw the introduction of Juniors (14 years and under) and Youth (15-19 years old). “Since 2013 we have also had youth teams compete at the Youth World Championships.

And despite the threat that her condition will continue to deteriorate as she gets older, she says it won’t stop her playing the game which some experts describe as one of the toughest sports you’ve never heard of. “Since first trying Goalball, I have loved the game,” she says.

ISSUE 20

WINTER 2019

Take care of yourself too

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Have NDIS funding? No problem Find out how you can save even more when you buy direct from Conni.

Lab Tested & Chemical Free See all our Conni Kids products at www.conni.com.au/kids

ISSUE 20

WINTER 2019

www.sourcekids.com.au

BY JULIE JONES

SOURCE KIDS

ACCESSIBLE CRUISE HOLIDAYS

ACCESSIBLE CRUISING

CRUISING HAS BECOME A POPULAR HOLIDAY CHOICE FOR AUSTRALIAN TRAVELERS AND THERE’S A GOOD REASON IT’S HIGH ON THE WISH-LIST OF MANY TRAVELLING WITH A DISABILITY. Not only do cruises offer great value for money with all meals and many activities included in the package price, but there’s good accessibility on most of the ships. Passengers with mobility restrictions can take hoists, commodes and shower chairs on board making it easier to travel with specific equipment.

ACCESSIBLE CABINS Accessible cabins are available on most ships and they generally more spacious than the average cabin. The cabins do vary between ships and cruise lines but as a general rule they provide a step-free shower area, shower seat and sufficient circulation space for a wheelchair user in the bathroom and main cabin. Some accessible cabins have a ramp to access a private balcony. You need to keep in mind, however that accessible cabins are in high demand and it’s essential that you book as early as possible. Six to 12 months in advance of when you want to travel is advisable.

SHORE EXCURSIONS

SERVICES FOR GUESTS WITH A DISABILITY Cruise ships cater well to guests with a disability. Most companies will ask guests to fill out a form at the time of booking listing any specific disabilities and needs. Some cruise ships provide large print menus and orientation tours for guests with a vision impairment. If you are travelling with a person with a hearing impairment, many ships will provide visual or tactile alert systems. Guests with autism or developmental disabilities are often offered priority boarding and dietary requirements are usually accommodated if the cruise line is made aware of needs in advance. Blended food can be provided by restaurant chefs for those that need a specific consistency. Some cruise lines are now even going that extra mile to make travel more comfortable for children with autism by offering autism-friendly toys for

families to play with in their own cabin. Toys have been specially selected to keep children with autism and other development disabilities happy and engaged. It should be noted that cruise lines require children to be toilet trained to enter the swimming pools and to participate in the kids’ club. It seems once on board some parents have negotiated to be called if their child needs to go to the toilet or be changed, but this very much seems to be on a case by case basis, and the official line is that all children must be toilet trained. Cruise ships have good medical facilities on board but treatment is expensive, so it’s essential to take travel insurance which covers existing medical conditions. This is especially important given passengers will be evacuated to the next port’s hospital facilities in the case of any major medical incident. Taking into account all of the above, cruising has many advantages for families with extra needs and who doesn’t enjoy having all meals and entertainment taken care of on a daily basis. A winner all round!

courtesy of visitnoosa.com.au

As lovely as it is to relax on board a cruise ship, the highlight for most passengers is the opportunity to go on shore excursions. Not all shore excursions are accessible, however. Some ports require tender (small boat) transfers to the shore and the majority of cruise ships require a person to be able to transfer from their wheelchair to access the tender boats. Before booking a cruise, enquire how many of the ports visited on the cruise’s itinerary are accessible so that there is no disappointment once you’re on board. New Zealand is a destination with good shore access.

HOLIDAY IN NOOSA Enjoy an all-ability family getaway in Noosa, and have your loved-one looked after by our highly experienced, disability support staff. Sunshine Butterflies is a registered NDIS provider and disability support charity, providing unique daily learning, respite, educational and recreational programs for people living with disabilities.

Give us a call on 07 5470 2830 www.sunshinebutterflies.com.au

ISSUE 20

WINTER 2019

General Store Waterproof Bed Linen, Furniture & Clothing Protectors

BrollySheetsGeneralStore.com Bandanas

Brolly Sheets

Chair Pads

Created out of the love for one boy, William, who was diagnosed with Autism just before his second birthday. Proudly an Australian business who design and manufacture their own educational products, and create sensory spaces for Primary Schools. Striving to ensure that all children, diagnosis or not, are supported, guided and included.

Plus Doona Protectors, Waterproof Fitted & Flat Sheets, Bibs & more

More information can be found at

Brolly Sheets General Store.com is a registered provider to the NDIS

www.williamready.com.au

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

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

www.illumereading.com.au

PERIOD-PROOF UNDERWEAR

for your little lady

RED by Modibodi has been designed with your daughter in mind - to offer her reliable period protection so she can be her best self!

Using patented Modifier TechnologyTM, RED underwear has a leak-proof absorbent gusset allowing her to wear one pair all day long and ditch pads and tampons for good. modibodi.com/red

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www.sourcekids.com.au

N O S WHAT' CALENDAR OF

July

11 Gold Telethon Appeal (NSW) www.schf.org.au/event/gold-appeal

1-31 Fragile X Awareness Month fragilex.org.au/who-are-we/awarenessmonth/

15 National Buddy Day www.buddyday.org.au/

2 World Disorders of the Corpus Callosum Awareness Day nodcc.org/dcc-awareness-day

16 Sensory Movie Screenings – Dumbo www.eventcinemas.com.au/EventsFestivals/ SensoryFriendlyScreening

5-6 Source Kids Disability Expo, Brisbane Convention & Exhibition Centre www.sourcekids.com.au/expo-brisbane

17-29 World Continence Week www.continence.org.au/

6-7 Gold Coast Marathon www.goldcoastmarathon.com.au/

28 Red Nose Day rednoseday.com.au

10 Pine Valley Railway Special Needs Family Day www.facebook.com/ events/2250986685019315/

29 Whoosh by Sensorium Theatre (for children with autism or profound and multiple disabilities), Melbourne Arts Centre www.artscentremelbourne.com.au/whatson/2019/kids-and-families/whoosh

EXPO BRISBANE CONVENTION AND EXHIBITION CENTRE

5 - 6 JULY, 2019 FREE ENTRY

WHAT'S ON

10 The Red Tree (audio described performance and tactile tour), Sydney Opera House www.sydneyoperahouse.com/events/whatson/Kids-and-Families/2019/the-red-tree. html

21 Revolting Rhymes & Dirty Beasts (relaxed performance), Sydney Opera House www.sydneyoperahouse.com/events/ whats-on/Kids-and-Families/2019/revoltingrhymes-and-dirty-beasts.html 28 Sensory Movie Screenings The Secret Life of Pets 2

12 Caboolture Library backstage pass (QLD) www.facebook.com/pg/Sensorysouls/events

DISABILITY

EVENTS

June 13 Redcliffe Library backstage pass (QLD) www.facebook.com/pg/Sensorysouls/events

SOURCE KIDS

18 Revolting Rhymes & Dirty Beasts (Auslan interpreted performance), Sydney Opera House www.sydneyoperahouse.com/events/ whats-on/Kids-and-Families/2019/revoltingrhymes-and-dirty-beasts.html 19 Beep (relaxed performance), Sydney Opera House www.sydneyoperahouse.com/events/whatson/Kids-and-Families/2019/beep.html 20 Sensory Souls Driven by What’s Inside Day Caboolture Showgrounds (QLD) www.facebook.com/ events/306899320228920/

www.eventcinemas.com.au/EventsFestivals/ SensoryFriendlyScreening

August 2

Jeans for Genes Day

www.jeansforgenes.org.au

5-11

Sleep Awareness Week

www.sleephealthfoundation.org.au 7-10 Whoosh by Sensorium Theatre (for children with autism or profound and multiple disabilities), Sydney Opera House www.sydneyoperahouse.com/events/whatson/Kids-and-Families/2019/whoosh.html 9

North Lakes Library backstage pass (QLD

www.facebook.com/pg/Sensorysouls/events 28

Sensory Movie Screenings

Toy Story 4

www.eventcinemas.com.au/EventsFestivals/

www.sourcekids.com.au/expo-brisbane

SensoryFriendlyScreening

ISSUE 20

WINTER 2019

STATE DIRECTORY

VICTORIA / TASMANIA

Start planning today to protect them tomorrow

Wills Trustee Services Powers of Attorney Executor Services

statetrustees.com.au STL_Source_Kids_May_2019_v5.indd 1

28/05/2019 4:08:39 PM

STATE DIRECTORY

VICTORIA / TASMANIA

STATE DIRECTORY

We know Paediatrics

VICTORIA / TASMANIA

Introducing... Topcat Treasure, specialising in washable continence products and supplies

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

www.geelongwheelchairs.com.au

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

Servicing Melbourne, Geelong and Victoria’s South West

Time to talk about PUBERTY? We can help.

Join our Puberty Information Sessions for young people with cognitive disability.

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

Showroom: 12 Dickson Cresent, North Ringwood, Victoria 3134 Phone 9876 3374 www.topcattreasure.com.au

JAM Music Therapy: helping each child reach their potential through music. Music is an ideal medium of therapy for children. It is fun and motivating and importantly, positively affects all areas of development. It engages all areas of the brain, providing a fun and engaging workout. JAM provides: • Individualised assessments, plans & programs • Individual and group sessions for all ages • Fully qualified, Registered Music Therapists • Is Melbourne’s premier music therapy private practice, established in 1998.

Registered NDIS Provider

! jammusictherapy info@jammusictherapy.com

www.jammusictherapy.com

MORE THAN JUST FURNITURE ...they’re therapy in a bag! KloudSacs are comforting, foam filled bean bag furniture for children with special needs requiring deep pressure.

www.fpv.org.au/puberty-workshop

The foam filling provides proprioceptive (deep pressure) sensory input and anxiety relief, through calming the nervous system, to assist with emotional self-regulation. KloudSacs may be purchased through NDIS. Ask your therapist if the foam filled goodness of a KloudSac can assist and become integral to the sensory needs of your child.

Contact Libby, phone 0407 096 922 email libby@kloudsac.com.au

www.kloudsac.com.au/special-needs-bean-bags

STATE DIRECTORY

VICTORIA / TASMANIA

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

STATE DIRECTORY

VICTORIA / TASMANIA

Create new possibilities for your child through NeuroMovement ®

Moving Outcomes is a Melbourne-based practice specialising in The Anat Baniel Method® (ABM) NeuroMovement®. ABM NeuroMovement® Is a gentle, hands-on movement method backed by the science of neuroplasticity – the ability of the brain to change itself. The method uses innovative movement exercises to facilitate the creation of new neural patterns in the brain. This can lead to improvements in physical, cognitive, behavioural and emotional development, opening up new possibilities for your child’s future.

Parents share their experiences...

Sonia Maginnity is Director of Moving Outcomes and a Certified NeuroMovement® Practitioner. She is one of the first Practitioners to offer this breakthrough method in Australia for: • Cerebral palsy • ASD/ADD/ADHD • Learning difficulties • Genetic disorders

• Brain injury • Stroke • Chronic pain • Scoliosis

Make the move to better outcomes

“From the beginning, Jess has taken to this gentle, yet transformative, method. From steadfastly refusing to enter any clinical setting, she is always the first into the car to get to ABM sessions…her enthusiasm has not waned, instead it’s grown over the months since her first session.”

“We love watching Indi interact with us more after each ABM session and seeing Indi explore her body and discover what she can achieve. It’s so safe, special and exciting to watch.”

- Susan

- Juliette

soniamaginnity@gmail.com www.movingoutcomes.com.au +61 412 706 793

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)

181 Balcombe Road, Beaumaris Ph. 9583 1378

For your next party please call Bec Burch 0408 893 486

reception@happysmilesforkids.com.au HSKsMrMiso

hsfk_mrmiso

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

STATE DIRECTORY

VICTORIA / TASMANIA

STATE DIRECTORY

VICTORIA / TASMANIA

cpconnect We understand that as a parent, family member or an individual with cerebral palsy, there are different challenges in life that many others donâ&#x20AC;&#x2122;t fully understand. Thatâ&#x20AC;&#x2122;s why we developed our CP Connect service. Our free CP Connect service provides information, support and advice, and can link you into our cerebral palsy network and community.

Get in touch today 1300 277 600 cpsn.org.au

We understand cerebral palsy. For over 20 years we have been serving individuals and families living with CP. As an organisation governed and led by parents and families, we have always been able to truly understand the needs of our community and have developed relevant and necessary services to help individuals and families flourish.

STATE DIRECTORY

NSW / ACT

NORTH WEST SYDNEY | WESTERN SYDNEY | SOUTHERN HIGHLANDS

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

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

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

02 9622 8500

growingearlyminds.org.au

NSW / ACT

Growing Early Minds is an initiative of Growing Potential Ltd.

STATE DIRECTORY

NSW / ACT

Everything in one place Our Hospital For over 60 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 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 â&#x20AC;&#x201C; such as genetic or chromosomal disorders, birth trauma, cerebral palsy, head injuries, and conditions acquired after birth. Allowah Presbyterian Childrenâ&#x20AC;&#x2122;s Hospital is a fully accredited and licensed hospital â&#x20AC;&#x201C; 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.

STATE DIRECTORY

NSW / ACT

“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.”

Our NDIS Supports Allowah Disability Support Services is an NDIS accredited disability support provider. We provide a huge range of supports, including: • • • • • • • •

short stay accommodation for children with high level needs – planned or emergency, after school activity program, holiday programmes, mid-week adventures, therapy; early intervention; 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.

“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.”

“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.”

STATE DIRECTORY

NSW / ACT

10-12 JULY 2019 SYDNEY

www.otaus2019.com.au

AUSTRALIA’S LARGEST OCCUPATIONAL THERAPY EXHIBITION

FREE GENERAL PUBLIC EXHIBITION PASS 28th NATIONAL CONFERENCE AND EXHIBITION 2019

TOGETHER TOWARDS TOMORROW

11-12 July 2019, 10.45am – 12.15pm ICC SYDNEY BOOKINGS: Pre-book your place today, register online via www.trybooking.com/book/event?eid=447508&bof=1

FURTHER INFORMATION: PH: 61 3 9415 2900 EMAIL: conference2019@otaus.com.au

Find products and services close to you Search our online directory by category and location to find therapy providers, equipment and aids, toys and resources, support services, professional services, sport and recreation and more!

Visit www.sourcekidsdirectory.com.au

STATE DIRECTORY

LEGO HEAVEN!

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

QUEENSLAND

ADVERTISE YOUR BUSINESS HERE

AND TELL MORE THAN 25,000 PEOPLE ABOUT YOUR PRODUCT OR SERVICE! Contact advertising@sourcekids.com.au to find out more.

Shop D, 1 Finucane Road, Capalaba QLD 4057

Phone: 07 3390 1288

www.bricksnfun.com.au

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

Phone 0456 017 779 for your next holiday hire or purchase

“Our support is unique to each individual” Quality In-home supports for people with disabilities living in QLD • Accommodation support • Personal and household care • Community access • Community and lifestyle support • Respite and advocacy • A unique service • Advocate what’s important • Proactive responsibility • Direct communication • Working funding packages • Competitive rates • Autonomy and choice • Employment opportunities • Community engagement

Erin Christian—Managing Director

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

www.ywss.com.au

QUEENSLAND

Why choose Your Way Support Services?

STATE DIRECTORY

QUEENSLAND

SOURCE KIDS

BOOKS FOR SIBLINGS

Books for siblings of children with disabilities SIBLINGS OF CHILDREN WITH SPECIAL NEEDS ARE AMAZING HUMAN BEINGS. THEIR LIVES ARE OFTEN VERY DIFFERENT TO THAT OF THEIR FRIENDS AND THEY MAY SOMETIMES NEED A BIT OF HELP WHILE NAVIGATING THEIR JOURNEY. HERE ARE SOME GREAT BOOKS WHICH PROVIDE TIPS AND ADVICE AND SHARE THE STORIES OF OTHERS GOING THROUGH SIMILAR THINGS.

JUST BECAUSE

LEAH’S VOICE

'My big sister Clemmie is my best friend. She can't walk, talk, move around much, cook macaroni, pilot a plane, juggle or do algebra. I don't know why she doesn't do these things. Just because.' Just Because tells of a brother's love for his sister. He is so enthusiastic about just how loving and special she is, and delights in telling us about all the fun things they do together. Only as his tale unfolds does the reader begin to realise that his sister has special needs... and by then we just accept as he does all the wonderful things about her.

Leah's Voice is a story that touches on the difficulties children encounter when they meet a child with special needs such as autism. Children who have a brother or sister with special needs may find it difficult to explain to their friends or feel disappointed when their friends aren't more understanding. Leah's Voice tells the story of two sisters facing these challenges. Through her kindness and devotion, one sister teaches by example the importance of including everyone and showing acceptance.

VIEWS FROM OUR SHOES: GROWING UP WITH A BROTHER OR SISTER WITH SPECIAL NEEDS "I can't imagine having a plain old sister," writes ten-year-old Ryan Clearwater. He is one of 45 siblings in View From Our Shoes who share their experiences as the brother or sister of someone with a disability. The kids whose essays are featured here range in age from four to 18 and are the siblings of youngsters with a variety of special needs, including autism, cerebral palsy, development delays, ADD, hydrocephalus, visual and hearing impairments, Down and Tourette syndromes. Their personal tales introduce young siblings to others like them, perhaps for the first time, and allow them to compare experiences.

WE'LL PAINT THE OCTOPUS RED As six-year-old Emma anticipates the birth of her new baby brother or sister, she vividly imagines all of the things they can do together. Emma feels ready to be a big sister! Then when the baby is born, her dad tells her that it's a boy and he has something called Down syndrome. Finally, she asks, "If Isaac has this Down thing, then what can't he do?". Her dad thinks about it, then tells her that as long as they are patient with him, and help him when he needs it, there probably isn't anything Isaac can't do.

OH BROTHER! GROWING UP WITH A SPECIAL NEEDS SIBLING Living with a sibling who has special needs can be difficult for a child to deal with, day after day. This book provides anecdotal examples, selfhelp guidelines and practical coping techniques to promote positive, realistic attitudes as well as the benefits of having a special needs sibling.

NOAH’S GARDEN - WHEN SOMEONE YOU LOVE IS IN THE HOSPITAL Noah and his family are living in The Children’s Hospital because his new sister, Jessica, was born with a serious medical condition. Normal family life is suspended indefinitely for Noah, but in the true spirit of childhood, he spends his days in the hospital garden, creating an imaginary world, longing for the day when Jess can join him. Noah’s Garden is based on the author’s observations of her friends' experiences in a Melbourne Hospital where they lived for seven months after their daughter, Jessica, was born with a serious medical condition.

FASTEN YOUR SEATBELT Even the closest brothers and sisters don't always get along or understand each other. Add a disability like Down syndrome to the mix, and that sibling relationship gets even more complicated, especially for teenagers. Fasten Your Seatbelt is written exclusively for teens with a brother or sister with Down syndrome. In an easy-toread, question and answer format, it tackles a broad range of their most common issues and concerns. Thoughtful, knowledgeable answers are provided by Brian Skotko, the brother of a young woman with Down syndrome, and Sue Levine, a social worker focused on sibling issues for the past 30 years.

MY BROTHER CHARLIE Callie is very proud of her brother Charlie. He’s good at so many things like swimming, playing the piano, running fast. And Charlie has a special way with animals, especially their dog, Harriett. But sometimes Charlie gets very quiet. His words get locked inside him, and he seems far away. Charlie is like any other boy – and he has autism. In this story, told from a sister’s point of view, we meet a family whose oldest son teaches them important lessons about togetherness, hope, tolerance, and love. Holly Robinson Peete, bestselling author, actress, and autism spokesperson, has paired with her daughter, Ryan, to co-author this uplifting book based on their own personal experiences with Holly’s son and Ryan’s brother, RJ, who has autism. ISSUE 20

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COMPETITION

This fun and engaging ‘Learning Can Be Fun’ pack contains: 1. Dinosaur Reward Chart 2. Fairy Reward Chart 3. Alphabet Flash Cards 4. Multiplication Flash Cards 5. Australia is Fun Placemat 6. Colours Are Fun Placemat 7. Poster Numbers Are Fun 8. Poster Healthy Eating 9. M y First Puzzle - Numbers 1 to 15

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ISSUE 20

WINTER 2019

TiLite Pilot Rea

Watch your kid soar in the ultra-lightweight TiLite Pilot. Finally, a chair that moves and grows with your child.