Source Kids Autumn 2017 by Source Kids

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Issue 11 - Autumn 2017

The

magic

AAC of

Unlocking your child’s voice

Meet Peter Rowe H Medical Cannabis – the latest H Sanfilippo syndrome

Helping Kids be Kids

We help when others can't Variety – the Children’s Charity helps children and their families with ﬁnancial support for things like wheelchairs, specialist equipment and medical supplies, when you can’t aﬀord it, and when government assistance isn’t available.

Find out more about Variety - the Children’s support programs today. Visit us at variety.org.au/vic and follow us @varietyvic

Lachie

AUTUMN 17

CONTENTS Features 12

Regulars 4

Medicinal Cannabis in Australia

AAC feature

14 T he magic of AAC: unlocking your child’s voice

18 Speechie tips - which device is best for my child?

Welcome

Products we love

Cooper’s travels

Family profile – Goad family

Special needs teacher in focus – Rachael Haaren

Multimedia we love

20 How the Hunter family uses AAC 22 Using AAC in school – Nambour

24 AAC devices – product review 27 Top 10 tips for AAC device

State Special School

success

Clothing product feature

Living in regional and remote Australia

The Peter Rowe show

Alternative therapies – we explore the options

Rare disease in profile – Sanfilippo syndrome

Tech-man – text to speech

Sporty kids – athletics

Book reviews

Directory

Competition corner

What’s on calendar

AUTUMN 17

Welcome to Source Kids Once you accept that your child will be different, not better or worse – just different – that’s the first step. We published this quote on Facebook recently, and it is one that struck a chord with me. Well me and the other 1000 people who liked, loved and shared it. This encapsulates the journey of special needs parenting in a single sentence for me. It took a long time to accept my daughter was different, as I suspect it does for many on this path – after all, we are all different – but when I did accept this, it changed the way I approached the task of raising a child with special needs and the wave of highs and lows that come with that. It’s not just our quotes that have been getting some attention online. For those following our online content, we’ve welcomed some new writers recently and they have been a hit! From our new Dad blogger, to parents sharing their story and inspiring words, to professional contributors imparting advice and expertise – make sure you jump online and check it out. This month we welcome our new partner Variety - the Children’s Charity to the Source Kids community. For those who don’t know about them, Variety are the amazing charity that help when others can’t. They help children and families by funding things like wheelchairs, specialist equipment and medical supplies, when families can’t afford it and government assistance isn’t available. A big welcome to Variety! And I’m getting to our current issue – Autumn 2017 (where did summer go!). This issue is jam packed with great articles including: The magic of AAC: unlocking your child’s voice, medical cannabis, Sanfilippo syndrome and the Peter Rowe show. I hope you enjoy the read!

Emma Price CEO/Founder

Source Kids CDSA PO Box 5279, Launceston TAS 7250 Phone: 03 6327 1995 ABN: 66 434 598 812 Web: www.sourcekids.com.au Send all letters and submissions to: Source Kids, PO Box 5279 Launceston TAS 7250 or email editor@sourcekids.com.au Editorial enquiries: 03 6327 1995

Editorial Editor: Marie-Louise Willis  Writers: Marie-Louise Willis and Rachel Williams Contributors: Emma Price, Naomi Sirianni, Cooper Smith, Michael Young, Tracey Bode, Stephanie Goad, Beck Kelly, Rachael Haaren, Sarah Hewitt, Irene Hunter Advertising and Marketing Business Development and Marketing Manager: Naomi Sirianni For advertising enquires please call 0447 755 043 or email advertising@sourcekids.com.au Digital Content Editor Nicole Davis For digital content enquires and submissions email nicole@sourcekids.com.au Graphic Design Imogen Brown

F L Y I N G

Publisher 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

C O L O U R S P R I N T I N G

Cover Photography Maree Neilson - Mazzi Fine Art Photography www.mazzi.com.au

Cover Story The magic of AAC was brought to life by the delightful Alex Davis, who has cerebral palsy and severe oral and verbal dyspraxia. Alex is six years old, lives with her brother and mum and dad in Brisbane. She has a wicked sense of humour, an incredible memory and loves Barbie, ballet, swimming, sleeping in at the weekend and she is a demon at UNO! Alex is making magic with Proloquo2Go on an iPad.

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a Bustle Bag – see page 54 for details

Bustle Bags

ELISpoon

Bustle Bags break down some of the barriers associated with special needs: this is a functional backpack specifically designed with autism and anxiety in mind.

ELISpoon enables independent eating for people with hand coordination difficulties such as cerebral palsy, tremors and spinal cord injuries.

Bustle Bags aim to ease anxiety, help maintain balance and body awareness, reduce tactile defensiveness, self-injury behaviour and repetitive body movement. All of these allow children to complete everyday daily tasks with ease. There are several features such as strap clasps to attach sensory tools, padded straps to mimic a compression vest, hip belt and a clear pouch for ID tag or daily schedule. Plus the waterproof bottom or large compartments is perfect for communication devices. The Bustle Bag is a great, practical addition that’s bound to simplify your child’s school day. www.bustlebags.com

Teaching Tac Tiles

This revolutionary spoon has no electrical components or batteries, making it easy to use and to clean. Whatever movement a child’s wrist performs, the bowl of the spoon remains horizontal and keeps the food in place. The ELISpoon is affordable and designed to make life easier as its user gains self-confidence and a sense of control. Distributed exclusively by Performance Health ANZ Ph: 1300 473 422 www.elispoon.com

Mini Moon Noomi’s Mini Moon is a round shaped beanbag and great fun to snuggle with. Designed for children it can also be used as a footstool. The filling is a small bead (please be mindful), the fabric is beautiful soft cotton and spandex, and the main reason Noomi products are so comfortable; it stretches and moulds to your body for perfect support. Child resistant zippers are used for peace of mind. www.noomi.com.au

Tactile learning is a bag full of fun! Colourful, engaging pieces with rich textures provide a great way to engage a child’s senses and strengthen fine motor skills. Reach into the bag to find two matching shapes or textures only by touch, or follow activity cards. Vocabulary and simple maths skills are built while learning shape identification. Smooth, bumpy, rough or ridged - these tiles are ideal for early learning. www.teaching.com.au

NOW

10-11 May 2017 Sydney Showground, Sydney Olympic Park 24 May 2017 Royal International Convention Centre, RNA Showgrounds Brisbane

Your choice, Your control On display will be the latest in assistive technology, aids and equipment, as well as options for mobility, communication, travel services and lifestyle options. The Independent Living Expo is an event that welcomes all those involved in ensuring better outcomes for people with disability of all ages. The Expo is of interest for everyone, whether a consumer, care giver, allied health practitioner, equipment funder or support organisation.

Pre register now to receive

FREE COFFEE

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CONFERENCE PROGRAM

www.atsaindependentlivingexpo.com.au or call 1300 789 845 for all the details Media Partner

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Cooper’s Travels Cooper Smith is 11 years old and a keen traveller and foodie. Cooper uses a manual wheelchair while he travels as he has dystonic quadriplegia cerebral palsy. You can see more of his adventures on Instagram @ thewheelfoodie. Bendigo is a two-and-a-half-hour drive from Melbourne and has a history of a gold rush. We discovered parks, museums and street art. I love learning about science and couldn’t wait to explore Discovery Bendigo. At Discovery Bendigo I got to go down the highest vertical slide in the Southern Hemisphere. I walked up three flights of stairs to the top. I wore overalls so I didn’t get hurt and had to hang on a bar before I flew down the slide. I did it three times it was so much fun! I also learnt about the solar system, magnets and lots of science topics. Add it to your list if you visit Bendigo.

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Rare Disease in Profile

The neurodegenerative disease has no cure and there is no effective treatment available. It’s an agonising journey.

Sanfilippo

“The English language does not contain words that adequately describe the impact that this double diagnosis has had on our family, we have been absolutely shattered and devastated and this is beyond anything we ever imagined possible,” Meg says.

You could easily forgive Meg and Al Donnell for cocooning themselves and their children away from life.

Over time, seven-year-old Isla and five-year-old Jude’s brain cells will fill up with waste that the body is unable to process.

You see, their beautiful daughter, Isla, and son, Jude, are dying. They don’t know how long they have together. The Sydney couple is facing the horrible reality of losing not one but both their children before they become adults – such is the cruel nature of the rare disease they both have. They are two of the 70-odd sufferers of Sanfilippo in Australia.

As the brain gets progressively damaged, they will experience hyperactivity, sleeplessness, loss of speech and cognitive skills, mental retardation, cardiac issues, seizures, loss of mobility, dementia and finally death. Isla was diagnosed with Sanfilippo when she was four - Meg and Al had known that her development wasn’t in line with other children and it was confirmed when she started Kindergarten and the teacher expressed concern. They had Jude tested too. The result was positive. “They both have the same sub-type of the disease (type A) caused by the same genetic fault, which they both inherited from us,” Meg says. “There appear to be some minor differences in how the disease is progressing in them that are most likely due to other genetic factors, in the same way that healthy siblings have different development I suppose.” After the diagnosis, doctors told the family there was no hope; there was no cure. It’s a familiar story for those with a rare disease - because of the small number of children affected there’s little incentive for drug companies to fund research. “Not good enough,” the Donnells say. “We did not accept that there was nothing that could be done and we realised the only thing more tragic than losing both our kids to the disease was if it was for nothing, for nothing to have changed,” Meg states. Meg has been active since - no hiding away wondering what could have or should have been – dedicating her life to ensure her children have the best chance possible and giving a brighter future to other children who may be affected by the disease. She quit her job and started the Sanfilippo Children’s Foundation (SCF) to fund vital research into gene and stem cell therapy - raising almost $2 million since 2013 for research in Australia, the UK, Canada and America.

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Some of the funds have gone to US-based biotech company Abeona Therapeutics, which plans to conduct the first Sanfilippo gene therapy trial in Australia, subject to regulatory approval. There is no timeline for approval or any indication who might be eligible to take part but it’s the first glimmer of hope for Sanfilippo sufferers around the country. A slight chance they might be able to slow the progression of the disease. While they wait, the Donnells want to share their story with as many people as possible to ensure the foundation is at the forefront of people’s minds but they are quick to point out it’s “not the Isla and Jude show”. “While my children were the catalyst for me starting the foundation, we work for the benefit of all children with the condition, including those not even born yet,” she says. They won’t rest. Well, they can’t relax anyway. One of the major impacts of the disease is hyperarousal both children have boundless energy, which can lead to dangerous situations and very little sleep in the household. The family is also counting the cost on their hip pocket. They are spending $20,000 a year on medical expenses including speech, behavioural and occupational therapy but that’s of little concern to them - it’s not as bad as it could be, they say. “When my kids were diagnosed, we thought that we were looking at a lifespan of about 12 - 15 years with a dreadful quality of life,” Meg admits. “Already I think my kids are doing better than expected. “The reality is that there is a wide spectrum and different kids progress differently through the disease. My hope is that we can keep them well enough for as long as possible so they can continue to enjoy a good quality of life. “I think it is also a reasonable hope that there will be interventions or treatments found in their lifetime that will help them, either in slowing the disease’s progression and/ or in easing symptoms of the condition.”

Meg’s advice to other special needs parents: 1. Get connected with the network of families living with the condition. Whether they are in the next street or on the other side of the world, technology has made it easy to connect and share information. These people will become a great support network and source of information. 2. You are going to need to be the expert when it comes to your child. As well as parent and care-giver, you are now going to need to become your child’s voice and advocate. This crosses all aspects of your child’s care from medical to palliative/support interventions to family support. Don’t doubt your instincts on what is best for your child and never feel uncomfortable questioning an expert. 3. Have hope. I am not talking about false hope where miracles occur but never give up hope that you can provide a better life for your child than the one you were handed upon diagnosis. There is a lot that is happening in research and lots of opportunity for families to contribute to and influence that.

What is Sanfilippo? Sanfilippo is a rare genetic condition that causes fatal brain damage. It is referred to as a childhood disease because most patients never reach adulthood. Sanfilippo, or MPSIII, is a metabolic disorder. One in 70,000 children is born with the inherited condition, which is caused by an enzyme deficiency. The lack of enzyme prevents the body from going through its natural recycling process, causing cellular malfunction. The disease has four subtypes (A, B, C and D). Each subtype corresponds to a specific deficient enzyme. For more details visit the SCF website www.sanfilippo.org.au

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AUTUMN 17

It’s easier to get a gun than...

medicinal cannabis

in Australia It’s been more than 12 months since the Federal Government passed legislation to allow chronically ill patients to legally access medicinal cannabis. But those at the centre of the fight say it’s easier to get a gun in Australia than it is to access products legally. As we go to print, the Federal Government has announced plans to “fast-track” importation by loosening laws as a temporary measure. But, one NSW father says the move is a step sideways, not forwards. Michael Oakley says that the situation won’t improve until the government expedites the licensing of Australiangrown and produced medicinal cannabis.

Michael’s son Ben has Stiff Person Syndrome, a one-in-amillion neurological disorder that affects his mid spine and has left him in constant pain. He recently spent two days in Canberra, meeting with the staff of new Federal Health Minister Greg Hunt, Opposition Leader Bill Shorten and other MPs from the Liberal and Labor Parties, the Greens and One Nation. His attempts to meet with Prime Minister Malcolm Turnbull and Mr Dutton personally were not successful. Michael and Ben are trying to tell those in power that amendments to the Narcotic Drugs Act, which were passed last February, haven’t gone far enough. The federal legislation came into effect in October and it is understood that the first license to grow a commercialscale crop in Australia, was only given recently _ meaning a locally-grown cannabinoid is still months away. And, to make matters worse, there has been a police crack-down on many of the people who are illegally manufacturing the produce to give to patients including Ben. It’s not good enough, Mr Oakley says. “The rules the Federal Government have set almost identically mimic the laws around opium, which is processed into morphine. Medical-grade opium can be deadly in the wrong hands. Cannabis has never been the cause of death of a single person in all human history,’’ Mr Oakley says. “This is a herbal treatment and should be given the consideration of a herbal treatment. “It really is easier to get a firearm in Australia than medicinal cannabis.” Mr Oakley said there had been up to 40 organisations in Australia who submitted applications for a licence to produce medicinal cannabis, but licences weren’t being granted quickly enough. “I know of one company in NSW that’s spent $5 million to invest in infrastructure to process the product - they have ticked all the boxes and are just waiting on the NSW Government for licence approval,” he said. Since the Federal Government first softened its stance on the product for medical purposes, some states have been quicker to act than others. Nationally, it’s understood there are 23 “authorised prescribers”, including 21 in New South Wales and two in Queensland.

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Victoria was the first state to pass legislation legalising the use of medicinal cannabis - that state’s government has just paid for the purchase of an overseas shipment of supply to give 29 critically ill children access to the drug immediately. Tasmanian specialist medical practitioners are allowed to prescribe the drug to patients suffering serious and chronic illness but no doctors have been authorised to actually do so, as the government works on a prescribed access scheme. In NSW there are trials under way and some epilepsy sufferers are allowed access under a compassionate access scheme and in the ACT, an advisory board is being established to facilitate a scheme. Michael says the situation is ridiculously complicated and extremely frustrating.

of his primary treatment, Intra-venous Immunoglobulin or IVIG, a plasma based treatment that has helped to stabilise Ben’s condition,” Michael says. “We started Ben on MC because modern medicine had let him down. By not getting him better and removing the treatment that had helped him to reach a level of comfort we were all getting desperate. “Of course, I was concerned but I am a nurse with over 26 years of experience so we took things slowly, crossed off as many checks and balances as we could to not put him in any more danger. I have seen where Jenny Hallam makes her oil from product that is grown illegally and given to her. “She is producing it to food-grade standard and we have had no issues. We only have three months’ supply left after she was raided by South Australian Police.”

“The government framework was set up so it could happen but there has been nothing done towards the education for doctors - they don’t know what their options are and how to access it because it’s so restrictive and prohibitive,” he said.

Michael said he believed the black-market option “is the only way” because the official importation process from the Netherlands or Canada, can take eight months, costs up to $40,000 and carries with it a risk of severe international penalties unless you have the correct approvals from government.

Michael and Ben are shouting their story from the rooftop, establishing Roll On Ben Oakley to help others to understand his rare condition.

Michael says there is still such a long way to go to get easy access to reliable, legal supply.

Ben first started feeling pain after a training bike ride in November, 2012. “We all thought that he had pulled a muscle but this was not to be the case. Many months of pain and discomfort were to follow without explanation as to what had happened to my fit and active boy,” Michael recalls. “Ben has gone from being a cyclist and triathlete to needing a wheelchair for anything more than a very short distance. “He has acute, full body muscle spasm, even amongst SPS sufferers this is rare, the spasm appears similar to an epileptic seizure but Ben remains fully alert, aware and in the most intense pain.” Ben likens the experience to what you might feel if someone tasered your spine. “Each spasm is accompanied by not only intense pain but also huge increases in Ben’s blood pressure (recorded at 208/190) which is more than enough to cause a stroke or heart attack and his body temperature goes as high as 41.5. “When we started Ben on medicinal cannabis it was literally because his specialist took the step to remove one

He’s willing to go to Canberra and “get in their face” as many times as needed to help his son, and the hundreds of others suffering across the country who have tried medicinal cannabis products and have had positive results. “I hope by the end of the year a licence has been given, a crop is in the ground and the product is processed ready to hit the shelves for doctors to be able to prescribe it,” he said. “We will keep fighting. This has to be done.”

AAC

AUTUMN 17

magic

The

AAC

Unlocking your child’s voice Having a child who is non-verbal or who has a speech and language disorder does not necessarily mean a life of not understanding what they want, where they hurt, and even their thoughts, ideas and inspirations. While functional speech is usually the initial goal of families attempting to introduce AAC, providing the opportunity to unlock their child’s voice through an alternate method can mean that functional speech is only the beginning.

What is AAC? AAC stands for Augmentative and Alternative Communication and includes all communication methods used alongside or to replace speech for those who are unable to speak due to a speech and language impairment. AAC includes unaided and aided (low-tech and high-tech) forms and many people use a combination of methods. AAC can unlock the voice of a person unable to use theirs, providing the ability to access functional speech (such as making a choice) as well as providing insight into the person’s thoughts, feelings and inspirations.

Who uses AAC? Stephen Hawking, widely recognised as one of the world’s finest minds uses AAC. So does JJ DiMeo, the fictional character on the hit American TV series, Speechless. People with autism, cerebral palsy, hearing impairments, intellectual disabilities, acquired brain injuries and degenerative disorders such as motor neuron disease, multiple sclerosis and Parkinson’s disease can all use AAC to help access their voices.

Should I introduce it to my child? If your child is unable to communicate as much as they want/need to then AAC is for them.

Won’t it stop my child from speaking? No. In fact, studies have shown that learning a form of AAC has increased speech ability in people with autism and developmental delays.

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What skills does my child need to be able to manage AAC? None. It used to be widely thought that the child needed to have mastered certain skills prior to the introduction of AAC, including being able to understand cause and effect (that the picture represents an object) and some language, as well as having motor skills sufficiently developed to manage a device, and an interest in communicating. This is no longer the case and the concept of ‘Presume Competence’ is now embraced by practitioners who say that all those skills can be learnt during the process of teaching and modelling AAC, just as a baby, who has no knowledge of language, learns to speak after we surround them with words all day long, in numerous capacities.

Unaided or aided? Low-tech or high-tech? What’s the best?

Low-tech: Low-tech devices are any devices that don’t require batteries, electricity or electronics to function. Examples of low-tech devices include PECS and PODD. High-tech: High-tech devices can be either specifically created for AAC or devices that use programs or apps that allow for AAC (like computers or iPads). High-tech devices also include speech generating devices (SGDs) and Voice Output Communication Aids (VOCAS).

Respecting multi-modal communication If you are teaching your child to use a new AAC device, it is particularly important to respect multi-modal communication. Multi-modal communication is used by all of us. We don’t only communicate using words: we smile at someone to greet them, wink at a joke, wave goodbye, send a text, write a letter – and they’re all great ways to get our point across.

Unaided: Sign language, gestures and facial expressions all fall into this category.

In the same way, someone using an AAC device is also able to use many communication types and it is important to be open to that. When teaching a new communication method, it is important to recognise that often a point, gesture, or sign is the easiest and most effective way of communicating something and not to dismiss that by insisting that the same message is given again on the device. The aim is to help your child communicate, not to frustrate them out of trying to learn a new skill.

Aided: Aided communication devices come in two formats: low-tech and high-tech.

For more information about multi-modal communication, see our resources section at the end of this article.

Most people who use AAC use a mixture of options and, although we live in a high-tech world, high-tech is not necessarily best. It is important to find the AAC method that best suits your child and your family and be open to using a mix. Low-tech options (such as PODD) often mesh well with a high-tech (such as eyegaze).

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AAC What else do I need to know? There is no way to sugar coat this: teaching your child how to communicate through using AAC is hard work. If you think of how many words a baby will hear in the first year of their life before they begin to use the most basic of speech, and then how many more they need to be exposed to before they have a full grasp of language, you will understand that a weekly session with your speechie is not going to cut it in terms of teaching your child to use AAC. You are going to have to learn to use it and then model it. All the time. It is not a commitment for the faint of heart, but then, we special needs parents don’t back away from a challenge, do we?

And the rewards? Hearing your precious person saying: “I love you” for the first time, or being able to tell you that they like the pink dress or want a drink of lemonade and not juice – priceless.

Where to go for more information There is some incredible information available to help and guide you through this process. Some great places to start are: Websites: www.praacticalaac.org - PrAACtical AAC supports a community of professionals and families who are determined to improve the communication and literacy abilities of people with significant communication difficulties. This site is the bomb – you will find everything you need to know about AAC here.

Facebook Support Groups: PrAACtically Speaking AAC – Australia – Run by Irene Hunter, our wonderful family case study mum. Parents of Proloquo2Go Users – A closed group for parents of Proloquo2go users. AAC Through Motivate, Model, Move Out Of The Way – A closed group about AAC.

PROVEN RESOURCES FOR

SPECIAL EDUCATION PROFESSIONALS

www.niederfamily.blogspot.com.au - This isn’t actually a blog about AAC but it is about a family who have a daughter with a disability and their passionate embrace of AAC. Dana is the wise, funny, warm-hearted mum, who shares the ups (and downs) of teaching and modelling AAC in a very real way. You will be charmed. And inspired. www.angelman.org/resources-education/ communication-training-series - An amazing free series of webinars on AAC and literacy by the Angelman Syndrome Foundation. www.assistiveware.com/dos-and-donts-aac-multimodal-communication - An excellent article on the dos and don’ts of multi-modal communication. www.agosci.org.au - AGOSCI is an Australian group interested in enhancing the participation of all people with complex communication needs. There is a small annual membership to belong but that does buy access to their webinar series, which is all about AAC; the ability to connect with many of the people involved in AAC in Australia; and they run a biennial AAC conference, the next one to be held in Melbourne in May 2017.

Our tools, such as evidence-based PECS®, professional development and integrated support services are effective for instructional strategies, Augmentative Alternative Communication (AAC), inclusion and classroom management. Helping educators and administrators successfully achieve mandates, comply with IEPs and implement meaningful improvements.

Speak with one of our associates at admin@pecsaustralia.com, +61 3 9097 1655 or visit us online at www.pecsaustralia.com.

He has a voice. Let’s find it.

Please visit us online at

www.zyteq.com.au to download your FREE e-book “Choosing the right communication device for your child”

Zyteq pty ltd

Ph 1800 818 353

info@zyteq.com.au

NDIS registered

ABN 81 132 895 268

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AAC

Speechie tips:

Which device is best for my child?

You may have seen children using eye gaze systems, iPads and other Speech Generating Devices (SGD) and wondered whether your child could use a similar system. So how do you choose the best device for your child? The answer to this question is more involved than finding a product on a website because every child has unique characteristics, goals, needs and preferences. It is important that the choice of communication device is guided by a clinical process which respects individuality.

So where to start? Choosing a communication device is a process ideally guided by the family, involving a select team who collaborate and detail the goals, needs and preferences of the child, and then match these criteria to the available technology. A SGD may be a useful addition to a child’s communication toolkit. The ‘everyone can communicate’ principle means we are most likely already responding to and therefore encouraging natural forms of communication such as gesture, vocalisation, facial expression and body language. This natural communication may be extended to include unaided or low-tech communication methods such as signing and communication books or boards. The aim is for any child to have at their disposal a toolkit of communication methods to use every day. An electronic communication device may offer advantages for a child in one or more of the following areas: 1. Voice output – The communication device speaks out the message generated by the child. This means that the child’s message is more likely to be understood by anyone, such as friends, siblings and teachers, as they don’t need to understand signing or other individual forms of communication. Voice output means that a message can be heard by a group, or from the back seat of the car, or over the telephone.

2. Independent access – The technology offers a range of access options such as switch control (this can be almost any switch controlled by foot, head, finger, elbow, muscle contraction or other specific movement), head tracking or other mouse emulation such as joystick or trackball, or eye gaze control. An access method may need to be learned over a period of time, but the ultimate aim is for independence so the child can generate their own message, or story, or schoolwork without needing someone to interpret or assist in the message formulation. 3. Computer functions – The SGDs can be powerful computers, which offer wider communication functions and not only a voice. Many systems include email, Facebook, talking photo albums and apps for written work too. It may be best to demonstrate this match the person to the technology (MPT) process with an example. Jade is a four-year-old girl preparing to start school next year. While she is in early intervention, the goal to find a more independent means of communication has been set. Currently she uses some vocalisations, natural gestures, a single message device activated using her hand and a multilevel communication book, which she indicates to using eye pointing (she looks at the symbol she wants). Her parents, teachers and allied health professionals are all learning to model AAC using her communication book. This will help her learn the language structures, the vocabulary and how to use AAC. Jade’s parents feel that she could benefit from a system she can use independently especially for school next year. The single message device is limited and does not offer her enough opportunity to ‘speak’. The family and other ‘team members’ usually start discussing goals, preferences and funding towards choosing a communication device. Service agreements

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and a plan may be established. Next in the MPT process, the occupational therapist (OT) would evaluate Jade’s movements to work out her best method of access. This will start with a review of seating and positioning, as postural support and stability are important. Jade has been using a single message switch device with her hand. It was observed that this was effortful and unreliable for Jade. The OT decided to trial a switch activated by her head, and the parents would also like to explore eye gaze access. The Parents and OT have also started the process of applying for a power wheelchair. The plan would be to mount Jade’s AAC device to her wheelchair so it is accessible when she needs it. The parents, teacher and speech pathologist (SP) discussed Jade’s day-to-day activities and evaluate the communication methods she uses and their effectiveness. They also identified missed communication opportunities and future gaps in her current systems. The SP provided information about her language and literacy learning to outline what a communication device should include. The software would need to match the language development goals for Jade, providing for her ‘today’ and her ‘tomorrow’ system, so that it can grow with her. A list of features is developed by the team. For Jade her device features include: switch accessible, eye gaze accessible, mounted to wheelchair and flexible software to accommodate language and literacy learning. There may be other features listed, which may relate to Jade’s environment and the device management such as: required battery life, durability/ruggedness, ease of editing, ease of charging. There may be several devices that have the features identified by the team. The next step is to trial devices, so access to the Electronic Assistive Technology (EAT) is required. Communication devices may be trialed in several ways. Assessment services are offered at several organisations in most states of Australia. Individual clinicians may be able to access devices to trial in your sessions with them. To make the right choice of device it is

important to be aware of the available options on the market that meet your criteria, and then to compare two or three devices to understand the differences. In addition to the device itself, availability of training, support and repair services are likely to be factors involved in the decision. Choosing the right communication device for your child is a journey towards making an informed choice. If an application for funding is to be made, then the reports from the allied health professionals also support the informed decision. Once your child has obtained their preferred device the ‘talking’ can begin. This will be in the context of the child continuing to develop skills in language, communication and competence in using the system and in an environment where AAC is supported. There are many resources and services to assist sharing your aim for your child’s success. Tracey Bode - Speech Pathologist and Managing Director - Zyteq www.zyteq.com.au

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AAC

How the Hunter family uses AAC Who is in your family? Mum and Dad (Irene and Simon), Gavin (eight) and little brother Jamie (six).

Diagnosis? Autism, ADHD, moderate intellectual impairment (and informally, severe dyspraxia).

Where do you live? Sydney

Why we use AAC: Gavin has only just started speaking a little in the last 12 months. He had been completely non-verbal because of his dyspraxia, so he needs AAC to communicate and this has been a priority through his early intervention years and now as part of his school experience.

When we introduced it: We started with PECS (Picture Exchange Communication System) when he was two-and-a-half years, right after his ASD diagnosis. He transitioned to wearing an iPod on a lanyard with the Proloquo2Go app at three-and-a-half years and then transitioned again to an iPad (while keeping the iPod for running around) when he was four

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AUTUMN 17

years old. He transitioned to the new and much more comprehensive core vocab based Proloquo2Go just before he started school at five years old.

The device we use: We currently primarily use an iPad with the Proloquo2Go AAC app, but also use the same app on an iPod and harness for times when the larger iPad is not suitable like at Soccerjoeys or the park (although I will often carry the full-size iPad to model as he has access to the larger vocab that way).

How it works for us: The best thing we ever did was start AAC early! Gavin has very few behavioural issues and I believe this is in part because he can communicate his needs effectively to anyone he needs to (unlike signing, which I feel is a good receptive tool but is limited expressively because so few people understand it). It has been a LOT of hard work, and in all honesty, has been led by me rather than any of our professionals as I have self-educated and learned more about best practice AAC and using speech generating apps with robust vocabulary. I am afraid Australia is a little behind in this regards. Gavin’s “talker” goes with him everywhere, and we selected a school that prioritises AAC, with all staff trained in using Proloquo2Go. We have made sure he has a good base of core language, as well as assertive language _ the ability to say “no” and “stop” are such vital self-advocacy skills.

The positives: Gavin can communicate! He can let anyone he is with know if he is hungry, thirsty or even if he needs to go to the toilet (a very important one!). He can also take part in activities more fully both at school and in the community, and can show his knowledge more easily - for example, he can answer questions at school expressively, rather than relying on selecting an answer from a field of visuals. I have also found my passion and purpose in life! I currently advocate and informally help people as much as possible, and when I am finished studying, will look to work in the field to help families set up and implement high tech AAC for their children.

The negatives: It is expensive. We lost a few iPods to bathing incidents, and have cracked a few iPad screens and the app itself is not cheap. It is up to $400 now, but I always tell people who complain about the cost that it is the equivalent of a few speech therapy sessions and provides your child with a voice! Updates are free, so it is a one-off purchase that will last a lifetime if needed. It is hard work. The success of your AAC user depends on the hard work of those around them. You need to learn as much as you can about AAC and how to support your child using it, and you need to do a LOT of modelling of the AAC system (they need to be spoken to in this new language to understand it and start to use it themselves). It is also essential to create as many communication opportunities as you can in day-to-day interactions, and sometimes that means you are sabotaging their routines and making their life a little more difficult, but this kind of tough love now will reap its rewards 10 times over when your child begins to communicate independently because of it.

Advice you would give to families thinking about introducing AAC: There are NO prerequisites for starting AAC and don’t let anyone tell you there are! There are so many AAC options out there, I truly believe there is an option for everyone. Similarly, do not let anyone tell you that your child should be limited to an extremely small vocabulary or to only focus on requesting. We made a lot of these mistakes in our early days and if I could change one thing, it would be to go back and start with a robust, core vocabulary and model, model, model! Every child deserves the right to communicate and if the professionals you are working with try to tell you that your child is “not ready” for AAC, find another professional! You can learn so much online via amazingly supportive Facebook groups and the online AAC community. There are plenty of parents out there doing it more-or-less on their own. It isn’t easy, but it’s worth it! You can connect with Irene on her Facebook page: PrAACtically-Speaking-AAC-Australia

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AAC

Using AAC

in school Nambour State Special School on the Sunshine Coast in Queensland is wholeheartedly embracing AAC. We spoke with Deputy Principal, Sarah Hewitt, to see how they use AAC within their school.

immersing them in an AAC rich environment where they see AAC being valued and used frequently and interactively. We want students to be able to express their own novel ideas. Some of the ways that we are supporting these aims are through investing in ongoing staff training and developing a parent network to engage, motivate and support parents in using AAC.

What is your approach to AAC?

How are the children responding?

At Nambour State Special School we believe every student has the right to communicate. Developing a student’s AAC skills enables them to have greater access to developing communication. Our aim is to engage our students by

We are seeing some really exciting communication across the whole school community. As well as the predicted higher levels of engagement within the classroom environment and academic progress, there has been a

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marked increase in social communication both within the classroom, in the playgrounds and between senior students and their buddies. We’re seeing an increase in student initiation of communication, beyond requesting, to share thoughts, opinions, jokes and feelings.

What are your goals with your AAC program? What is the ideal picture? Our goals for communication within the school are for students to be able to communicate what they want to say, to whom they want to say it, where ever and whenever they want to say it (even if it’s not what we want to hear!). Our goals for teachers are that they become competent communication partners; that they understand and use AAC to support students who are learning to communicate via AAC and that they interact with students in the language system the student uses. In an ideal world, we would like to see that AAC is simply another voice to be heard.

Why do you feel AAC is so important? Every student has ideas, thoughts, hopes, feelings and interests to express. These expressions are integral to enabling our students to connect with family and friends and become a valued member of society. We support students’ basic human right to understand others and be understood in all environments, as independently as possible.

What obstacles have you come up against? Parents often share their concerns that using AAC will result in their child regressing with their speech or that they will no longer talk. The research does not support

this. In fact, gains in speech will often be reported as AAC helps to build successful communication. Parents also often believe that their child will be unable to use a robust AAC system as they have a disability that will stop them from seeing, hearing, pointing to or understanding the system. There are AAC systems available to support children with a range of access issues to communicate. It is important that parents and the school team are all committed to and working towards a common goal.

In a school populated by children with so many levels of ability, how do you roll out a whole-school approach? We encourage our staff to model across the day, to say a range of things, for a whole variety of reasons. Teachers knowledge of their students supports them to focus their communication at the student’s level and to plan for the future.

The one thing you would love parents to know about AAC. AAC will open up your child’s world and enable them to have the potential to share their dreams with you. Communication is more than requesting, it’s about being able to communicate anything they want to anybody.

The one thing you would love to share with other teachers/schools who haven’t yet embraced AAC. Have the confidence to have a go and get ready to be excited about where your journey takes you!

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AAC

AAC devices

Product review

Finding the right communication device is an important step to unlocking your child’s voice. There is no right or wrong choice, just a variety of options that may or may not suit your child and their needs. High-tech or low-tech, ultimately the system your child feels comfortable with using is the best. It is a really good idea to find a therapist who is trained and experienced in AAC to assist you when making your decision. Some of the most popular products currently available are listed in this review.

Low-tech options:

PODD PODD (Pragmatic Organisation Dynamic Display) is a way of organising whole word and symbol vocabulary in a communication book or speech generating device to provide immersion and modeling for learning. The aim of PODD is to provide vocabulary: for continuous communication, for a range of messages, across a range of topics, in multiple environments. PODDs can have different formats, depending on the individual physical, sensory and communication needs of the person who will use it. PODDs have been developed over the past 15 years by Gayle Porter, a speech pathologist with the Cerebral Palsy Education Centre (CPEC) in Victoria. Each PODD format has been shaped by the experiences of both children with complex communication needs and their communication partners. A PODD is designed to be just one ‘tool’ in a person’s ‘toolbox of communication methods’. www.cpec.org.au

High-tech Options: Go Talk 20+ PECS PECS (Picture Exchange Communication System) was developed in 1985 as a unique augmentative/alternative communication intervention package for individuals with autism spectrum disorder and related developmental disabilities. PECS begins by teaching an individual to give a picture of a desired item to a ‘communicative partner’, who immediately honours the exchange as a request. The system goes on to teach discrimination of pictures and how to put them together in sentences. In the more advanced phases, individuals are taught to answer, question and to comment.

Attainment’s new GoTalk 20+ is a lightweight, rugged, powerful and portable communication tool. It is powerful with 100 message capacity – 20 message keys each with five distinct levels. Record a total of 15 minutes of message with new technology providing great sound quality. In addition to the 20 message keys, there are now five new “core message” keys, which stay the same on each level so you don’t need to re-record essential messages for each level.

PECS has been successful with individuals of all ages demonstrating a variety of communicative, cognitive and physical difficulties. Some learners using PECS also develop speech. Others may transition to a voice output system.

The GoTalk 20+ is easy to use: large buttons with built-in keyguard help users select the right message. The sturdy construction without mechanical levers and dials make GoTalk 20+ extremely durable. It is lightweight (650g) and its built-in handle makes it very portable. It’s easy to use every day, anywhere and affordably priced.

www.pecsaustralia.com

www.spectronics.com.au

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Proloquo2Go Proloquo2Go is an AAC app available for purchase and download to use on a standard iPad or iPod. The app is a complete communication solution providing many natural sounding text-to-speech voices, three complete research-based vocabularies, over 10,000 up-to-date symbols, powerful automatic conjugations, advanced word prediction, multi-user support, ease of use and the ability to fully customise vocabularies to meet the needs of individual users from beginning symbolic communication to full literacy. Search for Proloquo2Go in the app store at www.itunes. apple.com/au

Smart 3 The Smart 3 is an elegant, compact, hand-held speech generating, touch-screen communication device. Symbol or text message generation, with environment control, camera and phone features are provided via the installed Mind Express software. The remote/external Bluetooth display (EDDY) displays the message in text and acts as a speaker. This can be worn around the neck on a lanyard, or adhered to the back of the car headrest for the backseat passenger to view, handed to someone to read the message, placed it in the middle of the table for a meeting or at a restaurant. The Smart 3 can also make mobile phone calls (not all phones are suitable). www.zyteq.com.au

Eye Gaze: Grid Pad Eye 11 The Grid Pad Eye 11 ‘new generation’ is based on a powerful Windows 10 tablet. It is essentially a Grid Pad PRO 11 with eye gaze

added. This means you have all access options included with two switch ports built-in, a radio receiver for wireless switch connection, the sensitive capacity touchscreen, with the option of keyguards, extra USB ports to add alternative mouse access devices such as QUHA ZONO gyroscopic mouse, Smart Nav or Tracker Pro, n-Abler-Pro, for example. The eye gaze camera options include the MyGaze, and Alea IntelliGaze AAC or 360 editions. This is a great system for children or adults requiring a more compact device. With an 11 inch screen it can be wheelchair-mounted without blocking the view ahead. www.zyteq.com.au

Tobii Dynavox T-series The Tobii is a purposebuilt communication system in a tabletform style. It equips users with the power to speak up, giving them the freedom to participate in daily conversations, quickly answer questions in the classroom, and easily express how their day was. Users also benefit from the T7’s compact size by having the peace of mind in knowing that there are no limits to where their device can go. The T7 can also be easily mounted to a wheelchair for on-the-go communication. Flexible and robust, Compass brings effective and efficient communication to the T7. Loaded with the most extensive language content available on any AAC solution, Compass includes seven pagesets, Acapella and Ivona voices, including children’s voices, and so much more! A cloud-based connection can be set up to backup, update, personalise and manage your Compass solution, which is a great way for your entire communication team – therapist, educators, caregivers and loved ones – to connect to you, share communication pages, and personalise settings. There is access to dozens of therapy supports and goal planning resources, along with the ability to interact with a dynamic community of your peers and the Tobii Dynavox clinical and technical teams. www.linkassistive.com

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AAC

Top 10 tips for AAC device success 1.

Make it motivating

Learning new AAC skills can be tricky. The reward needs to be worth the effort. Find what is motivating for your child – it will be different for everyone.

2. Teach in a natural context Teach your child within their regular routines and activities. This helps them relate what they are learning to what they already know and increases retention of new learning.

3. Model When introducing an activity, model the activity prior to expecting your child to participate. Take a turn as a participant rather than an instructor to show them what they need to do and what the reward is.

4. Secure the equipment Mount or secure the equipment and accessories being used, so that it is in a consistent position each time your child tries to access it.

5. Wait, wait, wait Leave plenty of time for your child to process what they want to do and to initiate their reaction. Prompts can interrupt a child’s intent. Imagine everything the child needs to do to engage with the activity:

• Process instructions • Understand what is required of them • Figure out how to respond • Engage muscles • Focus on and perform the action

While some prompts can be necessary when learning, there should always be a plan to phase them out after a period of time to prevent the child becoming dependent on them and the prompt hierarchy should be followed.

6. Use a prompt hierarchy When there is a need to prompt, use a hierarchy to provide the least intrusive way appropriate. This gives your child the opportunity to be as independent as possible. Physical prompts should always be used as a last resort as they can make your child focus on the touch sensation rather than the activity.

• Wait – allow an opportunity to complete the activity independently. • Environmental cue – look at or draw attention to the activity.

• Gesture – Indicate with a motion what you want your child to do. • Model – Take a turn of the activity as a participant to show your child what you want them to do. • Verbal prompt – Prompt directed at the activity rather than the method - e.g. “I want to see the Elmo dance” rather than “Hit the switch”. • Partial physical prompt – Allow your child to finish the movement e.g. initiate movement at the elbow and then allow student to complete movement. • Full physical assistance – Hands-on assistance to complete the activity. Provide activity focused feedback

Provide feedback on the activity rather than giving instructions; e.g. – “I liked that song, what’s next?” rather than “Hit it again”.

8. Repetition with moderate differences Provide lots of repetition with slight difference to keep your child engaged. This doesn’t have to be a whole new activity but a variation in the activity to keep it interesting. Moderate differences in the activity are needed to keep them engaged to learn. 1000s of repetitions will be needed for the movements required to become automatic.

9. Balance the motor and cognitive demands Learning new AAC skills may be very difficult, both physically and cognitively. When teaching a new motor skill, initially keep the cognitive demands of the activity low. Once the motor plan becomes automatic you can then increase the cognitive demands of the activity. Short frequent opportunities throughout the day to learn these skills may be more beneficial than long sessions.

10. Remove the equipment when not in use Your child should never attempt to access the activity and have nothing happen, for example your child shouldn’t be placed in front of an eye gaze computer without eye gaze functioning, or a switch and mount should not be left in place when not connected to an activity, as this will work against the goal of teaching your child that their AAC device gives them choice and control. Information provided by The Independent Living Centre WA www.ilc.com.au

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Text to speech

Michael Young

The age of technology has opened many opportunities for children who otherwise would have difficulty with speech and communication. Augmented and Alternative Communication (or AAC) tools are now readily available through a variety of apps and devices that use text to speech technology. My son, who has a very limited vocabulary, uses Proloquo2go at school and home to give him the ability to say words, sentences and to interact with others in daily activities. However, while investigating AAC options, I stumbled on another use for text to speech that can support even communicative children. Like many young boys, my elder son is a reluctant reader. He loves listening as we read books to him every night but getting him to read one himself is like pulling teeth. To help him, I purchased a Kindle Touch 2016, which has a feature called VoiceView. This feature reads the book aloud when paired to a Bluetooth speaker. VoiceView offers a very robotic voice and certainly doesn’t match the listening quality of an audiobook but it enables him to read the eBook himself alongside the voice. Additionally, VoiceView has a feature where he can read the eBook himself – without the voice – but if he struggles with a word, he can tap on it and VoiceView will read the single word to him. It can also offer a dictionary definition of a word. This technology not only encourages him to read books but also provides him with confidence and strengthens his vocabulary at the same time. Similar features are available on other devices but the Kindle is completely focussed on reading, therefore removes the temptation of going online or playing games. Our son loves the device and we have seen his vocabulary grow.

I have also found that many Apple iDevice users are unaware of a screen reader function that allows the user to listen to the text on the screen. This feature allows the user to determine the speed in which the text is read and can be used to read all screen text regardless of whether you are on social media, reading an eBook or surfing the internet. To turn on this feature, go to Settings > General > Accessibility > Speech > and Toggle ‘Speak Screen’. Once the feature is turned on, it is activated by pulling down from the top of the screen with two fingers, and the speak screen menu appears. Again, the voice is very robotic but it could help young children learn or give the visually impaired assistance in navigation and reading. Android users have a similar feature called TalkBack. To activate it, go to your Settings menu > Accessibility > Vision > Talkback. TalkBack may need to be installed on the device and can be downloaded from Google Play. While these features exist for devices, computers also have similar applications at your disposal. Mac users can find them under the Accessibility menu > Speech, while Windows users can access a number of applications by searching ‘Text to Speech’ from the start up menu. The Microsoft Windows version takes some setting up to get it working efficiently, so if you struggle with technology, I would recommend that you look at a few downloadable text to speech programs to find one that suits your needs. Programs like NaturalReader and Balabolka are a good starting point to help improve the user experience. Text to speech applications are improving all the time. The voices are always being refined in terms of pronunciation and ease of listening. When we consider the volume of text-based information we read every day, having a text to speech option at our fingertips helps liberate those who find reading a challenge. Michael Young, Tech Tutors on Facebook @techtutorsau

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Educational Apron by Able Clothing RRP $90.00 This waterproof apron features wide velcro strips for adding visuals, pockets for unused prompts and is one size fits all. www.ableclothing.com.au

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The Cool Cap by Fun and Function RRP $19.99

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A baseball cap with weights placed along the rim where it’s most comfortable and therapeutic. It stays snug all the while providing sensory input through the head.

A large range of shoes, sandals and boots all catering to those needing extra stability and support. Fashionable and comfortable, these shoes are affordable and look good too. www.shop.carmellashouse.org.au

Zubits Magnetic Shoe Closures RRP From $19.99 Zubits magnetics simply lace onto the existing shoelaces and click together. No laces, no knots and ridiculously easy! www.zubits.com

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A sensory tool for self-regulation, allowing kids and adults to keep calm, concentrate and participate. Necklaces, bangles, pencil toppers, available in lots of designs and colours. www.ninjababies.com.au a Ninja Babies pack – see page 54 for details

Bummies Swim Nappy by Apikali RRP From $19.50 A reusable swim nappy designed to minimise leakage. Boasting an interior polyester mesh for easy clean up and coated nylon layer. www.apikali.com.au

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Tomato Glasses Australia RRP From $189.00

Emotichew by Chewigem RRP $12.00

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A super cute little accessory for your child! Green side says ‘talk to me’ and red says ‘leave me be’ thus allowing the wearer to have a voice.

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Moochies Phone Watch RRP $119.99 A two-way communication device that connects via an app, this watch can receive calls and messages, has GPS tracking with the option to set boundaries and an SOS button for emergencies.

AllNeeds Neckerchew by Cheeky Chompers RRP From $28.99 These super absorbent, larger-sized bibs with an attached teether are made from 100% cotton for older children and young adults.

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Living in regional and remote Australia Living in a regional or remote area of Australia is a lifestyle dream for so many people – especially if you’re stuck in gridlocked traffic on your way to work in the city. Or you may be imagining the Pinterest picture lifestyle idyll of a lazy acre or two, filled with chooks and organic veggies, free range kids getting into their childhood, one treehouse at a time. The realities of living in a regional or remote area of Australia mean that while the air is cleaner and the housing prices are cheaper, there are also a real shortage, or even lack of, services and supports that people living in metropolitan areas take for granted. And I’m not just talking about 24-hour bottle shops. While these are an inconvenience many people are willing to tack onto the con list and move on from, when you have a child with a disability, suddenly the ‘inconvenience’ can be more challenging to manage. Living in a regional area can mean that there are significant wait times to see paediatricians, obtain a diagnosis, and find therapists. There is not the choice of services and therapies available and even local hospitals may not be equipped to manage significant health issues. Something like needing an EEG can mean a long car trip – or a ride in an ambulance/helicopter in the case of an emergency. Living in a remote area can mean that none of these services are available, at all.

Financial assistance: Centrelink Payments We all know that everything costs more when you have a child with special needs. If you need to travel to access services, schooling or anything else for your child you may be eligible for some government assistance. Go to the Federal Government’s Human Services website for more information - www.humanservices.gov.au/customer/ services/centrelink/assistance-isolated-children-scheme Variety – the Children’s Charity Variety is the charity that just seems to swoop in when all other avenues have been exhausted. They fund tangible items and try to help if you are unable to fund an item through other funding streams. Variety is also focusing on regional giving as part of the Variety Bash in August this year, presenting several grants to children and organisations in the Gippsland region on the first two days, as well as visiting more remote schools and organisations on the journey to Queensland, as they do each year. Go to www.variety.org.au and find your state for more information on Variety events in your area or for how to apply for a grant.

Medical assistance: Accessing regular medical care and appointments can be close to impossible for remote families without the assistance of services such as The Flying Doctor Service (RFDS) and Angel Flight.

So how do families manage? We had a look at some of the services available to families.

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The Flying Doctor Service The RFDS’s emergency retrieval service operates 24 hours a day, seven days a week, delivering care to more than 290,000 Australians each year. The service has expanded to provide regular transfers of patients for life-saving surgery such as organ transplants and heart surgery, delivering critical support to those who need it most. The RFDS also delivers a broad range of essential health care services to rural and remote communities, including general practice, Aboriginal and Torres Strait Islander health, child and family health, social and emotional wellbeing, women’s health and health promotion. Go to www.flyingdoctor.org.au for more information. Angel Flight Angel Flight is a charity that coordinates non-emergency flights for people living in rural and regional areas more than 300 kilometres from a capital city. All flights are free and may involve patients travelling to medical facilities anywhere in Australia. Angel Flight pilots do not carry aeromedical staff or medical equipment so do not act as an alternative to the Royal Flying Doctor Service or Air Ambulance. Angel Flight regularly coordinates up to 20 flights per day. Volunteer drivers meet the plane at the airport to drive the patient to the airport and then back to the plane again. Some Angel Flight passengers, such as Lotus Walker (pictured with her mum, Sarah) have been transported to essential appointments many times. Lotus has brittle bone

disease and has been flying with Angel Flight since she was a baby and is the face on the Angel Flight brochures. She is now 11. For more information, go to www.angelflight.org.au

Accessing information: Staying informed and educated is essential. Keeping abreast of entitlements, support provisions and where you can go to for help is essential, especially when you live in an area where internet access can be unreliable. For some families, the only way of discovering information is at face-to-face events or over the telephone.

“Where you live, shouldn’t stop you from accessing the right disability information.” This is what the people from IDEAS (Information on Disability Education and Awareness Services) say. When living in remote and rural areas, the disadvantages experienced by people living with disability, their families and carers can be amplified and whilst the introduction of the NDIS has brought greater choice for individuals, for some it can be confusing, while, for others, the isolation makes it irrelevant. To access reliable and independent information applicable to your family’s situation contact IDEAS on 1800 029 904 or if you have reliable internet access, chat to one of the team online www.ideas.org.au

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The Kelly family Bendigo We chatted to Beck Kelly, who lives in the Central Victorian town of Bendigo with her husband Denis and their two children, Audrey, who is nine and Patrick, who is seven, about what it’s like to live in regional Australia.

have formed since moving to the country from Melbourne in 2002. All towns have their problems but what I have noticed about Bendigo is that if someone is in need, the town rallies support. It is amazing.

The challenges of living in regional Australia:

Diagnosis: I was diagnosed with autism in 2015. My daughter was diagnosed at the age of three with classic autism and my son at age two, also with classic autism. All three of us have anxiety and sensory processing as well.

What are the benefits of living in regional Australia? We love the benefits of a country lifestyle that includes bush living, regular jaunts out to Lake Eppalock for fishing, and swimming but most of all it’s the friendships that we

As I said, all towns have their problems and Bendigo is one of them. Bendigo’s wait times for services is extraordinary. Families are taking their children to Melbourne to access crucial doctor and specialist appointments because our therapeutic and medical systems are at capacity. We have a brilliant university but not enough choice for placement for courses such as speech, OT and psychology, so a lot of students have to do placement out of town and most go to Melbourne. Once their degrees are completed, we lose them to Melbourne. This is sad as we are losing potentially great therapists.

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How you manage services/therapy/ medical/respite/schooling: My children attend a lovely school in a bush setting. The school has under 50 children from Prep to Grade 6. It is an amazing learning environment for my children and we are incredibly grateful for the support they receive from the staff and families there. Originally my daughter was enrolled in the Catholic system but she was unhappy, so we moved her and she started term four in 2015. Since then she has shone. Her brother started there in 2016 and both kids are settled and so happy. This in turn makes us happy. Everybody wins! Carer Support Services, run through our local hospital, is doing fantastic work with providing families with respite and assistance with cleaning. They also assist an organisation that myself and five other Autistic/ Neurodivergent adults opened in our little town – the Bendigo Autistic Advocacy and Support Service. Wholly autistic led and driven we are creating a service that offers programs, advocacy and mentoring for the community. Since opening our doors we have been swamped and we couldn’t be happier.

My number one contact for assistance is my autistic community. The knowledge that comes from lived experience is crucial in navigating life and its many ups and downs. My family do not access respite. I don’t know if we ever will. I can see for a lot of parents that it has become an option to consider with the NDIS rolling out here in May but we have not even considered it in our children’s plans. We have a great network of friends and family here that help out when they can but I am quite stubborn and like to do things myself. Variety - the Children’s Charity have been an enormous support to not only my family but to countless Bendigo families. The Bendigo Autistic Advocacy and Support Service are working closely with Variety to bring a Regional Christmas Party for families of children with a disability or who are disadvantaged to our town. They have helped Audrey realise her dream of ongoing gymnastics training by funding her gym and competition fees as well as a competition trampoline. This is something we would never have been able to afford and they made this happen for her. We will forever be grateful to them and all the generous people who donate to them to help children like mine achieve their dreams.

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Sporty Kids all about

athletics

Anyone wanting to compete in track and field paraathletics must first obtain a classification, with rules determined by the International Federation. Classifications are broken down into five impairment groups, which are recognised nationally: physical, vision, intellectual and hearing impairments as well as transplant recipients. “Each disability group has a set of minimal disability criteria that an athlete must meet in order to be eligible to compete as an athlete with a disability,” explains Brett.

Australian athletes who compete with a disability are finally gaining the recognition and popularity they deserve. The Paralympic movement has ensured champions like Kurt Fearnley and Louise Sauvage have become household names alongside able-bodied heroes like Cathy Freeman. The Paralympic stars of the future will no doubt be showered with even greater public adoration given the growing funding, sponsorship and media awareness associated with it. Athletics Australia prides itself on its inclusion policy, which makes the sporting pursuit a true aspiration for children with special needs. Known as a foundation activity, athletics gives children the fundamental skills of running, jumping and throwing, which are transferable across all sports. Some children are starting athletics as young as four, and with more than 3000 paraathletes involved in athletics across the country; there has never been a better time for children to begin their journey. Athletics Australia Para-athletics Development Officer Brett Watton says the pursuit is fully-integrated. “All competitions and programs cater for people with impairments,” Brett says. “Inclusion is not something separate. It is embedded in all our products and programs.” Little Athletics promotes the important mantra of ‘Be your Best’. “There is an emphasis on fun, participation, performance, technique and getting involved with your family in physical and healthy activity. The motto of Little Athletics is ‘Family, Fun and Fitness’,” Brett says. “There are social and health benefits, fundamental movement patterns and coordination development. Monash Hospital has been using run programs to help with the rehab of neuro-impairment patients.”

Athletes must undergo specific Athlete Evaluation or Eligibility processes to obtain a classification. They’re required to provide evidence of their diagnosis to classifiers. Generally, this is written documentation from their doctor or specialist (for example a rehabilitation specialist, neurologist or ophthalmologist) that outlines their medical condition. Athletes may be required to provide additional test results or charts (for example X-rays, growth charts, MRI or visual field tests) to support their classification. “Once an athlete understands the classification procedures for their impairment group, they can then refer to the National Classification Calendar to attend the next available classification opportunity within their Member Association,” says Brett. “All athletes who appear on the Athletics Australia Classification Masterlist are able to compete in School Sport, Little Athletics and Athletics Australia Para-athletics.” Programs available include the IAAF Kids Athletics Program, which is delivered through the sporting schools programs. “We partner with Special Olympics Australia to deliver this program to students with special needs and impairments,” explains Brett. Athletes can also join a club through one of the state associations, where they can participate in weekly athletics competitions and an annual state and national championships. There is also an Athletics For The Outback program, which is a fully inclusive program for people with impairments. Athletics Australia also partners with disability sport organisations to support pathways for athletes with impairments via Sport Inclusion Australia, Special Olympics, Deaf Sports Australia, Australian Paralympic Committee and Disability Sports Australia. To find out more visit www.athletics.com.au/para-athletics

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points physio Key to remember

In-Profile With wheelchair superstar Kurt Fearnley as his hero, Jaryd Clifford was always going to be heading in the right direction with his sporting aspirations - and Jaryd hasn’t let a little thing like being declared legally blind stop him! Jaryd tested the sporting water with swimming, lacrosse, soccer, cricket and basketball before deciding to become a long-distance runner. The 17-year-old from Melbourne debuted for Australia at the 2015 IPC World Championships in Doha, where he placed seventh in the 5000m. Jaryd competed at the 2016 Rio Paralympic Games where he also finished seventh in both the 1500m and 5000m T12 category track events. The rise to international success has been a huge achievement for the teenager who was diagnosed with juvenile macular degeneration at age three. The condition has caused him to gradually lose his central vision and he was officially listed as legally blind by age 12 but he can match it with the best of the best in ablebodied athletics and won’t let his disability define him.

Jaryd was the first Australian to win a medal at a Junior • Accept the invitation (if your child wants to go!) National Championship in both para and able-body events • Ring the parent and do some gentle investigating. How many and encourages anyone to give the sport a try. children are attending? What activities are happening? Is the park,as hallelite or home forjust youras child’s needs? What “Paralympians are just andaccessible they are toilet facilities are there, if required? Indoor rock climbing dedicated to their training as the other athletes... it’s not parties for example, are not fun if you can’t participate. like a free ticket,” heFacilities said. may have modified harnesses and specialised instructors. A conversation with because the host asking Jaryd jokes he is happy not to be a sprinter, his about this is best done a week before the event, not as you arrive at the sight would probably testLethistheability to stay the lines venue! host know if yourwithin child is super sensitive to on the track. noises, allergic to latex or certain foods. • A “I use my ears a lot tonticipate that your child might not need to stay the whole listen to where everyone is around time. Many a party for anyone is made memorable by leaving me but I can see two metres in front of me reasonably before things turn ugly! Consider sleep times for your child or well, so I can see thehow person in front of me iffood they’re close,” much stimulation or party they can cope with. This is true for all of us!!! he said. • Make sure that you can stay for the main event – cake cutting, “I’ve always run with a vision impairment, so it’s just been puppet show, face painting! Explain to the host beforehand how I’ve learnt to run.” that you may not stay for the whole event.

Thankfully, he’s often the one out in front anyway! • Don’t be a helicopter parent! Let events unfold and watch from afar. Often another parent or child will step in to make Jaryd lives by the philosophy of, “not everything that is suggestions about how games or activities might work better faced can be changed, butchild. nothing can be changed until it for your is faced.” • Most of all – celebrate the event! As a parent of a child with special needs, you can be a great educator of other parents on how to make a party inclusive. • P in the tail on the donkey/ rabbit might be done sitting down or on a board that can be placed at different heights or on a wheelchair tray.

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There is no greater disability in society, than the inability to see a person as more. Robert M. Hensel

Photo: Cheryl Nonmus of OnQPhotography

The

Peter Rowe Show

Peter Rowe bounds up, smiling and cheery and thrusts his hand towards me to shake before cheekily stealing a hug, with a gleeful chuckle. Tracey, his assistant, berates him jokingly, kindness and laughter in her voice before telling me, apologetically, that Peter likes a hug. So far, so expected. Peter Rowe is exactly what society likes to tell us that Down syndrome looks like. Peter was born in 1964 and spent the first 30 years of his life able to communicate only on a very restricted level. His family was told that he had very little understanding and

comprehension. He was locked in a body and unable to share his thoughts, feelings or experiences. He was unable to ask for help. Peter sits next to Tracey and pushes the Qwerty board towards her, with some impatience. Peter Rowe, clearly, is a man with something to say. We are joined by Peter’s mum, Betty, and with the assistance of Tracey, who supports Peter’s hand and reads out the words he taps out, Peter begins to share his story.

I got to tell my mum: “I love you” Peter is eager to share how Facilitated Communication (FC) and Qwerty have changed his life.

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“You have no idea the sense of relief I felt when I was introduced to Qwerty and FC. I got to tell my mum, “I love you” and I was also able to share that I had been through some very bad experiences in the care I was in. My mum and I cried and cried. Some tears were happy and some were very sad.” “Imagine those trusted and in positions of authority telling your family that you are stupid and have nothing to say.” Betty then explains how Peter was 30 before the opportunity arose for him to be introduced to FC through Disability Services in Queensland. Jane Remington-Gurney started to teach FC to DSQ workers in care facilities and Peter was assessed as a suitable candidate. Before then they had no idea – or hope – of Peter being able to communicate with them. “After the first session Peter just sat on the bus on the way home and cried. I asked Jane why and she said that it was the relief. That it often happens,” Betty says.

Don’t be afraid to sit in the silence. That’s where the magic happens. Peter is a delightful mixture of wise and irreverent. He has a serious message to impart – but that doesn’t mean he is dull. Far from it. Despite, or perhaps because of, spending so long without a way to communicate his thoughts, Peter is very in tune with silence. We chat briefly about my daughter, who is non-verbal and his advice is poignant: “There is so much to be said when you sit in the silence with another person and just be present and show respect and empathy. You hear their soul. You feel their story and then they feel heard.”

“Don’t be afraid to sit in the silence. That’s where the magic happens.” And then, in typical Peter Rowe style, he cracks us all up by adding: “More people with the gift of full verbal ability need to zip it!” He uses his board with a speed that the fastest of typists would envy, Tracey faithfully reading each word as he taps it out. Are they really his words? Critics of FC claim that the information that the assistants relay could easily be misconstrued – or worse – made up entirely. The potential ramifications of this has resulted in FC being dropped by Disability Services, despite it creating the opportunity for so many to have their voice heard for the first time. Due to this history, I imagine, Peter and Tracey are keen to show me how they work. How Peter lifts his hand from the keys and pushes the board away the moment Tracey deviates slightly from the words that Peter intends to say. How Peter can move seamlessly from being assisted by Tracey on his left to his mum, Betty, on his right. Peter says: “FC saved my life. If I didn’t have a way to share my voice, I would not have wanted to live. I am now living a life that is so full of love and laughter and so coloured by the amazing people in my world. “Once I had FC I never looked back. I then went on to start art therapy for coping and to work through the trauma I had experienced. “FC opened my world. I was then able to get out all the stories and poems in my head and draw and paint everything in my imagination.” Tracey retells later how Peter began painting in blacks and greys “to get his dark thoughts out” and as he processed his trauma his colours brightened. Art has been his therapy and is now also one of his great loves.

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It’s not his only creative outlet, however. Peter has also written, illustrated, and self-published eight children’s books and is currently working on his memoir. His books are brightly illustrated, vibrant and the stories endearingly told. Peter says: “My books are very important to me because they are a part of me. Josh the Robot is me. He wants to teach adults and children alike to embrace and accept differences and promote diversity and acceptance in our communities. It’s not just about disabilities, it’s about helping others to find their voice and shout them from the rooftops: “I love who I am. I have something to say. Will you hear me?’” Peter is also a musician, a performer and a public speaker. It seems that after spending so many years with his voice locked away, now he wants to make sure it’s heard.

What is the Peter Rowe Show exactly? What is Peter hoping to achieve? “I am looking forward to doing presentations that are agents of change. I want to share my story and train these guys up and spread the word to the organisations that work in a box: a little brown boring box, where they don’t see that differences need to be embraced and that not everyone works the same way. For goodness sakes, it’s common sense, isn’t it?” Tracey adds: “Deconstruct your way of thinking.” Peter nods and then continues: “It’s not just about disabilities. It’s about advocating for everyone to find their voice. “People talk about basic human needs. Finding your voice and having it heard. It saved me.” Tracey and Peter have a very special bond. Tracey explains the responsibility of making sure she is speaking his words accurately, how she needs a clear head to do her job properly and that it’s a very humbling experience. She is more than just Peter’s FC assistant though, and it is very

clear that she wants to make sure that the world will get to hear and see who Peter is and what he has to share. They have embraced social media; art galleries are exhibiting Peter’s work and books shops are holding signings. People are starting to hear about Peter Rowe. I ask Peter: “Are you a movement for social change?” “Yes,” Peter answers simply. Decisively. “The Peter Rowe Show. Do whatever it takes to find your voice is the message.” Tracey says. “It will unsettle some people,” she adds, with a smile. Irrepressible, talented and charming, Peter Rowe is a smart thinker: a dynamo with a social conscience. Peter is breaking down barriers, changing perceptions and wowing the world one tap, word and brush stroke at a time. This is a man on a mission. A man to watch. The kind of person who makes change happen. While it is impossible not to be charmed by Peter, and to enjoy our time together, the most important take away of the day, for me, is the essential truth behind the concept of ‘Presume Competence’. We hear it so often, it is a part of the rhetoric of the majority of therapists and teachers I speak to, and yet, I wonder whether the importance of that message is lost a little with the day to day care of our non-verbal kids. We want to hear them speak, desperately, but do we truly know that their voices are more than just a list of choices or an ability to tell us where they hurt? How many people are silenced, not just due to their disability but also because no one believes they have anything to say? “Life is full of surprises. Once you get your head around what kind of surprise you are, you get to shine,” Peter says. “Shine, shimmer and shake!” he adds as he shakes his shoulders with a bit of a razzle and laughs. Find out more about Peter Rowe at www.peter-rowe.info or connect with him on Facebook @pwrowe or Instagram @the.peter.rowe.show

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Alternative Therapies we explore the options When we spend our days dragging our kids from appointment to appointment, it’s easy to get stuck in the drudgery of it all. It is highly likely that once your child received a diagnosis (or even before) you began taking them to a mixture of physio, speech, OT and psych. If you’ve been at this game for a while and wanting to mix things up a little, you may be interested to know that there are other therapy options available. While these don’t necessarily replace the more traditional methods, you may be surprised at the results making some changes can have. Please note that before starting any new type of treatment or therapy it is important to discuss it with your child’s primary care practitioner.

Animal assisted therapy Animals are incredible. They make us feel calm, seem to pick up on our moods, can comfort us and can even sense seizures in epileptics and/or assist when appropriately trained. They are also lots of fun to play with and can provide real incentive and motivation during a challenging therapy session. While Guide Dogs have been used to assist people with vision impairments for the last 70 years, the use of animals in other situations is a much more recent treatment development. The Australian Network for the Development of Animal Assisted Therapies (ANDAAT) defines Animal Assisted Therapy (AAT) as ‘where an animal is included in the treatment of a client with a predefined therapeutic goal.’ Within this framework there are four defined areas: visitation animal, therapy animal, service animal and assistance animal.

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Animal Assisted Therapy is used within a wide range of disciplines including physio, speech, psychology and OT. Animals utilised include dogs, horses, cats and even guinea pigs and birds. Go to www.andaat.org.au for more information.

A Sandplay session consists of the client creating scenes in a sandbox with the therapist’s collection of symbols and realistic figurines and is a bridge between talk and expressive therapies. Go to www.stanza.asn.au for more information.

Art/s therapy

Sound therapy

Art Therapists use visual art mediums (painting, drawing) and other creative expressions such as dance, movement, mime or drama as a therapeutic technique.

Practitioners of sound therapy claim it improves listening, learning and communication and that by listening to specially filtered music and stories through earphones, a child’s auditory processing system can be enhanced.

Art Therapy can be a very useful way of encouraging the expression of ideas in someone who may find it hard to express themselves verbally. It is also great for sensory and motor development. Go to www.anzata.org for more information.

Music therapy Music therapy is defined by the Australian Music Therapy Association Inc (AMTA) as a research-based practice and profession in which music is used to actively support people as they strive to improve their health, functioning and wellbeing. Music therapy can improve cognitive functioning, social communication skills, motor skills and assist in emotional development.

Sound therapy has been described as exercise for the ear and the auditory processing and sensory integration centres in the brain. Sound therapy can be beneficial when looking at therapy for a number of disorders including auditory processing disorder and autism. Go to www.soundtherapy.com.au for more information.

“Music therapy can be particularly useful for people with brain injuries, mental illness, neurological disorders and autism, for premature babies and people in palliative care,” says the AMTA. A music therapy session is led by a Registered Music Therapist (RMT), a musician who has completed a tertiary course in music therapy. Sessions can be individual, or in a group and the therapist works with their client/s to achieve goals in areas such as communication, movement, social, or mood. Go to www.austmta.org.au or www.rmtschangelives.com.au for more information.

Sandplay (or sand tray) therapy The Sandplay Therapy Association of New Zealand and Australia (STANZA) says “Sandplay is ‘hands on’ psychological work, and is an adjunct to talk therapy. It is a powerful therapeutic method that facilitates the psych’s natural capacity for healing.”

Yoga for the special child – the Sonia Sumar method Yoga for the special child is a comprehensive program of yoga techniques designed to enhance the natural development of children with special needs. It is gentle, therapeutic and safe for babies and children with Down syndrome, cerebral palsy, microcephaly, autism and other developmental disabilities. These methods also provide an effective benefit for children diagnosed with Attention Deficit Disorder, ADHD and learning disabilities. While this is an American program, there are Australian practitioners available. Go to www.facebook.com/YogaForTheSpecialChild for more information on this method.

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Animal assisted therapy We spoke with Tammie Mennis from Moveable Kids Children’s Physiotherapy about AAT.

How long have you been practicing? I graduated with a Bachelor of Physiotherapy (Hons) from the University of Queensland in 2001. I have been practicing as a physiotherapist for over 14 years, with 12 of those working specifically with families and children with delays and disabilities.

What initially drew you to AAT? I went to a conference back in 2003 as a newly graduated physiotherapist and there was a presentation about using animals as part of the therapeutic process. I was instantly drawn to the idea. Dogs had always been a part of my life, and I knew the joy dogs could bring into people’s lives, so at the time I thought that one day I would like to involve them in my practice. The opportunity finally arose last year when a course become available to train health professionals and their dogs to become a human-canine therapy team. The course provided the skills required to include my dog, Max, a Cavalier King Charles Spaniel, into my daily physiotherapy practice in a manner that was both safe and effective for my clients and Max.

Have you always worked with the same animal? Yes, Max, so far is the only animal I have worked with in the field of AAT. I see enormous benefits for the children in terms of motivation, that as knowledge and demand for AAT services grow, I can foresee the need for me to train and include another dog in my practice.

What benefits do you see? The number one benefit that I have seen using AAT in my practice has been motivation. The children’s motivation to participate in and complete therapeutic activates when a dog is involved improves dramatically. Most children are naturally drawn to the friendly, unjudgmental nature of dogs and they will do things for the dog that they will not easily do for adults. The dog often becomes their friend and ally and gives them motivation and confidence to come to therapy and participate in activities that are often challenging for them. For instance, I recently treated a child with vestibular processing difficulties and they were unable to walk up and down stairs. After vestibular therapy the child was ready to practise stairs. The fear the child had of stairs was only overcome by the motivation of wanting to go up the stairs to give Max a treat and hug. Max provides the motivation for the children to try when things seemed tough. Most of the children love Max so much they want to take him home with them!

Anything else you would like to share with our readers? There are a growing number of health professionals seeing the benefits of using dogs in their practices. I know of psychologists, psychiatrists, occupational therapists and teachers all using dogs in their professional work with children. I think as the benefits become more widely known and the networks for training professionals and their dogs grows, AAT will be become more widely used in practice.

Animal assisted physiotherapy for children Moveable Kids provides a full range of family focused physiotherapy services for children with developmental movement delays and disabilities on the north side of Brisbane. Benefits of using a dog during therapy include: • motivation to move, walk, play and interact • motivation to attend therapy • enhanced enjoyment and positivity • distraction from discomfort

• willingness to do things that may be difficult

0 41 3 295 534 info@moveablekids.com.au www.moveablekids.com.au

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Book Review Source Kids readers receive a 15% discount on our review books from Footprint Books www.footprint.com.au until 01/06/17. Remember to use the code SK217 at the checkout.

Music for Special Kids:

Musical Activities, Songs, Instruments and Resources By Pamela Ott

Art as an Early Intervention Tool for Children with Autism

Music is a powerful means of engaging children with developmental disabilities including autism, Down syndrome and cerebral palsy. Pamela Ott’s lively music activity book shows how music can be an effective and enjoyable way to enhance the education and development of children with special needs.

By Nicole Martin

Packed with inspiring tips, activities and song ideas, this book will have everybody singing, tapping and playing along! The book explains simple and fun ways of using songs, instruments and musical games to connect with children of all levels of ability, and includes helpful rhythm worksheets and sheet music. With a wide range of suggestions for songs and activities that encourage communication, increase self-esteem, stimulate fine and gross motor skills and motor coordination, and promote relaxation, this book has a great song for every situation!

The early years are the most critical period of learning for a child with autism. Therapeutic art-making can be a useful tool to tap into their imaginations and help them to express their thoughts and feelings. Art as an Early Intervention Tool for Children with Autism includes practical advice on helping a child move beyond scribbling, organising the child’s environment for maximum comfort and relaxation, and providing physical and sensory support. This book is packed with tips and suggestions for how to provide art therapy for children with autism – covering topics such as the basic materials required, safety issues, how to set up a workspace, and ideas for managing difficult behavior. The author writes from a professional and personal perspective – Nicole Martin is a qualified art therapist specialising in working with children with autism, and she also has a brother with autism. Perfect for busy parents and as a practical reference for professionals such as psychologists, teachers, occupational therapists, sensory integration therapists and anyone working with a child on the autism spectrum. WIN A copy of this book. Enter at www.sourcekids.com.au/win

This book of toe-tapping music activities is a must-have for parents, teachers, caregivers, music therapists and anybody else working with children with developmental disabilities. WIN A copy of this book. Enter at www.sourcekids.com.au/win

More Creative Coping Skills for Children:

Activities, Games, Stories and Handouts to Help Children Self-Regulate By Bonnie Thomas

This collection of fun and adaptable activities, games, stories and handouts is a complete resource for supporting children coping with stress and difficult emotions. From engaging arts and crafts, to interactive stories and relaxing meditations, all the interventions and activities are thematically structured so that each chapter contains the means for building specific skills or overcoming behavioural issues. The activities in this book are ideal for use with children aged three to 12 to help them rebalance and gain a strong grasp on their emotions. WIN A copy of this book. Enter at www.sourcekids.com.au/win

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Goad family family

Our family consists of: Mum – Stephanie, Dad – Adam, Jaimee (16) and Madison (13).

Our children are dealing with: Jaimee: At the age of six, Jaimee had a diagnosis of Obsessive Compulsive Disorder as well as Generalised Anxiety Disorder and Pervasive Development Disorder-Not Otherwise Specified. Jaimee is in Grade 12 at an independent school. Madison: Madison was diagnosed at the age of three with autism and at the age of five diagnosed as having an intellectual impairment. We are currently home-schooling Madison.

We Live: We live in the Coolum area on the gorgeous Sunshine Coast in Queensland. There was always going to be a clause in our relationship that included living 10 minutes from the beach as Adam surfs – a lot!

How we manage this: We have been a fly-in fly-out (FIFO) family for six years and this can have its challenges. Adam is sometimes away for up to 12 weeks and may get home for a week or two

and go again, or sometimes he will have eight weeks or more at home. We absolutely miss him when he is away so we do use Facetime and he calls each day. The time when he is at home is more precious than you could ever know. It’s quite funny as we have two different routines and schedules, one for when he is home and then one for when it’s just us girls. When Jamiee and Madison were diagnosed, I did as any parent would and threw myself into researching everything and anything. I remember when Madison was diagnosed I was with my sister Rebekah and the diagnosis of autism wasn’t a shock as I had known something wasn’t quite right back when she was 18 months old. I did feel numb though. Our GP at the time kept saying she was a slow learner but on an off chance we saw someone different one day and were sent straight up to the hospital where Madison ended up having a blood transfusion due to having an extremely low blood count. After that hospital incident, the paediatrician requested a hearing test and speech therapy and by the age of three we had our first label. The paediatrician told me to look up the Autism Queensland website and to read a book by Tony Attwood. That was it. Then he sent us on our merry way with Miss M throwing a really good wobbly on the way out the door. I didn’t cry for a while. How could I? I was too busy researching. Don’t worry, I’ve cried plenty since then but I’m hoping things are different now when families

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get their diagnosis. We were fortunate to have two lovely speechies back then and they came over right away and had cups of tea with us. We already had been receiving speech therapy but after the diagnosis we started occupational therapy and seeing a psychologist. It was intense. Our week was full and it was exhausting. It didn’t help that Madison didn’t sleep, which meant I didn’t sleep either. We had a placement at a primary school special ed unit and also at a C&K Kindy. We used the picture card system PECS, which worked well for Madison and we still use a picture schedule today. I found we were constantly having to advocate for Madison and we still do: that part never stops. Over time the strain of it all began to take its toll, so taking care of ourselves was a critical lesson to learn. We have always focused on a natural play-based type of therapy which is incorporated into daily life. Madison joined the Riding for Disabled and has also participated in an EAL (Equine Assisted Learning) program, both of which I highly recommend. Any animal based therapy has been extremely beneficial to Miss M. Madison attended a special school from the age of five and has been home-schooled since the age of 11. Home-schooling is a much better fit for us. It was totally daunting when we made the transition but now I wish I had made that decision sooner. Madison is a very different child now, the reduction of stress and anxiety is incredible, and she is a much happier child. The meltdowns are not as constant anymore. We still have them but her self-control increases daily, which is huge progress from two years ago. Madison does selfharm when in a meltdown by either scratching, biting or pulling her hair and sometimes will lash out at me by punching or kicking. We have holes in the walls and scratch marks in the paint, portable DVD players get thrown as well as remotes thrown at screens. Needless-to-say we have been through a lot of devices. In saying that though,

she is extremely remorseful and filled with dread and worry because of her actions and this breaks our hearts. At home we are learning mostly life skills. It looks very different to standard schooling and some may even say it’s more like unschooling. Madison is at a prep-aged student level with most things. For us as a family it is important that Madison has skills based on everyday living. Being able to self-care is extremely important and being able to do basic things such as toileting, bathing, feeding herself, and crossing the road safely don’t come easily for Madison and it is a very slow process. The simple things that people do every day and don’t think twice about are the skills that could take her months to learn. Up until six months ago she was always naked and she still does the nudie run every now and then. Now she will only wear the same clothing at home every day but she will change to leave the house - that’s progress to us. Winning! We really focus on Madison’s strengths and what her interests are as this helps build confidence and her selfesteem. She loves the beach, animals, drawing, costumes and acting, puppetry. Madison is a real movie buff and loves the old-style animation and, boy oh boy, can she sing. Not in front of people though, so you will often find me with my ear up against her door listening and trying to record it on my phone. We are members of our local community garden and we are soon to meet up with some other home-school families at an independent school where they teach all different types of lessons from art to woodwork. Madison does need her down time to recoup after doing any type of task and her room is her sanctuary. Puberty is a bit of a game changer, Madison was nine when puberty hit and holy dooly it can get intense. It helps to have a big sister! Jaimee and Madison have always had a different type of relationship. They love and care for one another most definitely but it is very different from your everyday sibling relationship. From early on Jaimee took on

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The PDD diagnosis was because she didn’t tick enough boxes at the time to have an Asperger’s diagnosis. She was very literal and had trouble reading people’s emotions and actions, she had trouble understanding our Australian slang and there wasn’t any flexibility in her thinking. Jaimee also has sensory issues around food and sound. We had psychiatrist and psychologist sessions, which involved CBT (Cognitive Behavioural Therapy) until she was 11 and she was placed on anti-depressant medication to help her extreme anxiety at the ripe old age of six. Jamiee was on and off them until she was 14.

the role of mini carer. It’s something I have tried to avoid, as I think she needs her time to grow up and have her own childhood but Jaimee is very protective of Madison and Madison always needs to know where her Jaimee is to make sure she is safe. Don’t get me wrong they still get annoyed with each other - they just interact differently. Madison doesn’t talk much so luckily Jaimee does. Growing up Jaimee was a quiet, shy and very sensitive little girl who would never do anything that would cause trouble. She was always very accommodating and wanting to please people. She still is to this day but not so quiet or shy anymore! The OCD and anxiety manifested in different ways. Her issues were mainly thought-based and extremely intense about death and dying, losing her family, people not loving or liking her if she wasn’t perfect, and also perfectionism in general. We still battle with the perfectionist side of things today but she has learned to rationalise with herself about what is important and what is not. She has also learnt to look at a situation or an issue with the facts and not her emotions and try to not to let thoughts escalate into something that isn’t anything to stress or worry over. This is still a work in progress. That’s a hard one for anybody to do sometimes.

As she has grown and built her toolbox of coping strategies over the years, my darling girl has made amazing progress. If you were to meet her today for the first time you wouldn’t realise that she has the labels of OCD, Anxiety and PDD-NOS. Jaimee decided she no longer wanted to be on medication when she was 14, which was when her journey changing her lifestyle to one of healthy eating began. A healthy body and a healthy mind. The anxiety is still there but it doesn’t dominate her world as it has in the past and the panic attacks are less frequent. There are still issues around food but she is the healthiest teen I know and is really pushing herself to change in this area. Jaimee is hard working in all that she does. She is very academic and thrives on excelling in her studies. She has had her own business as a face painter since she was 14, she is a junior coach at Absolute Aerials and she also trains in three classes a week in the arts of Aerial Silks and Lyra, plus Jamiee recently got her L Plates and is now learning to drive. Her passion is the arts in various forms including: graphic design, manga and animation. She loves aerials and she dreams of performing. Jaimee has goals to travel, which is amazing as this is my little girl who would never want to leave her mum’s side as she was so terrified of the world around her. If you were to go back a few years Jaimee would have thought these things were impossible but with time and support she is beginning to live her dreams and that is all any parent could wish for. Her plan is to go to the University of the Sunshine Coast and study Creative Industries as well as Japanese then travel the world. What could be better than that?

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This journey has taught us:

People we love

If I had my time over I would do things so differently. For a start, I’d stop worrying about what everyone else thinks. It’s our life, our family, our choices. I would stop trying to fit in with the mainstream society. I would trust in that gut feeling and know that as parents we understand our children more than anyone and should be confident in any choices we make for our family.

Services:

Always get a second opinion or third or fourth, until you are happy with whatever outcome you want to reach or have exhausted every avenue. I would love to go back and have home-schooled from the start. Also, let go of the mummy guilt - that’s a big one. Stop the thought that we might have been missing out on that so-called normal life.

• Lucinda Barry ND: Naturopath in Doonan 0431 380 376

When you have kids who are different, they are going to do different things. To me there is no such thing as normal - everyone is different in some way. It’s just that society dictates what the social norms are. Why should our kids have to fit into someone else’s idea of normal? We found we have lost friends and even family for being different, which is sad but then we have made some amazing friendships that are genuine and to be honest these are the people we want in our lives.

• Platinum Orthodontics, Mooloolaba: Dr Gavin Lenz, brilliant with Jaimee when we did the braces thing

Over time we have accepted our life is different, it is what it is and we take each day as it comes. We are grateful and remind ourselves each day how blessed we are to have each other. Madison will be with us well into Adam and my old age, so we are focused on giving her and Jaimee the best possible life we can. Our role as parents has been to give the girls every opportunity to succeed. Even if it is a tiny milestone, it’s progress. By giving them a safe and secure environment, a gentle push out of their comfort zones and a fulfilling and happy life, I feel Adam and I can be proud to know we have done a good job as parents.

• Low Tox Life with Alexx Stewart: www.lowtoxlife.com

All it takes is love, a bit of patience and hope. You’ve got to have hope.

• Absolute Aerials, Coolum: www.absoluteaerials.com.au • Kartwheel Kids Gymnastics and Circus, Caloundra: kartwheelkids.org.au • Sunshine Coast Riding for Disabled: they also run the Equine Assisted learning program • Natural Harvest Health Food Store, Coolum • New Earth Café, Coolum: Gluten, dairy free and organic • Dental Centre, Peregian Springs: Lisa Spence, lovely and gentle for people with anxiety

•S unshine Coast Sports Physio: Sharlean McNamara 0433 457 449 •F un for Kidz Face Painting: Jaimee is great with kids with special needs funforkidz@outlook.com •G KR Karate Sunshine Coast

Websites and Podcasts: • Jo Whitton has a son with OCD and Anxiety following the GAPS protocol: www.quirkycooking.com.au • The Wellness Couch has many health and wellness podcasts under the one umbrella: www.thewellnesscouch.com

Online Store: • Nourished Life: www.nourishedlife.com.au • Biome: www.biome.com.au

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Special Needs

Teacher

Name: Rachael Haaren

What is your teaching philosophy?

Ages you teach: Junior Primary special class – Year 1-3 (ages seven to nine). How long have you been teaching for?

“No student is too anything to be able to read and write (David Yoder, DJI-ABLENET Literacy Lecture, ISAAC 2000)”. I believe all students have the potential to succeed and have a right to succeed through high quality, targeted education.

I commenced teaching in 2012. 2017 will be my fifth year teaching Special Education.

What is your favourite activity to do with the children?

Why did you decide to become a special needs teacher? As part of my final university practicum placement, I was privileged to receive an opportunity to observe in the school’s Disability Unit. Viewing the work of staff and witnessing the positive impact they were able to have on students in this setting inspired me to pursue further opportunities in Special Education. I embarked on a journey as a School Service Officer (SSO) in the unit, whilst completing my final university subjects. It was this opportunity, which ignited my passion for supporting children to develop their full potential. These experiences have affirmed my view that teaching children and witnessing their achievements is a very unique, rewarding and satisfying opportunity.

My favourite activity is our weekly shopping program. Children choose two household items to purchase with their families from a shopping catalogue and bring their shopping list and money to school for us to purchase the items. The program has provided an increased capacity for students to become independent and confident shoppers.

What do you wish parents would tell you about their child at the beginning of the school year? I am a firm believer of establishing effective communication with all families. At the beginning of the year I encourage families to complete a getting to know your child proforma. I really find the information I gain from this to be useful for developing an effective learning and teaching environment for my students. Information that is often useful includes: the student’s likes, interests, strengths, challenges, things

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that may trigger behaviour and their primary form of communication. I really appreciate families who provide a snapshot of their home and family, and who inform me of any cultural or religious backgrounds. This information is useful in assisting me to develop a culturally appropriate environment for all learners.

What’s your favourite part of your job? I get job satisfaction through learning and having fun with the children. Each day brings our class new adventures. It’s exciting sharing this journey with children who have developed a love for learning and arrive at school with a smile and greet me with “Good morning Rachael” using an Augmentative and Alternative Communication device to communicate.

Are there any toys/books/products you recommend? Books: Incredible You! 10 ways to let your greatness shine through by Dr Wayne W.Dyer and Kristina Tracy. The Red Beast Controlling Anger in Children with Asperger’s Syndrome by K.I. Al-Ghani, illustrated by Haitham Al-Ghani. Products: Sensory tools including body socks and chew bracelets/ necklaces. SensoryTools.net Australia has a large variety of products. Professional Learning: Thriving children by Claire Crew is a professional learning program tailored for teachers and families. The program equips participants with ideas, tools and strategies to best help children reach their full potential through primitive reflexes and the Move to Learn Program.

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Multimedia

love

Download the app…

On Instagram…

Inclusive Kids Community Fund @inclusive_kids A community fund for disadvantaged children and families living in the Sunshine Coast, Noosa, Moreton Bay, Gympie and Cairns regions.

Listen to… Little Rockers Radio www.littlerockersradio.com.au

The iMums www.theimum.com Kids apps, product reviews, news, interviews, articles and giveaways! A group of four mums from around the world are dedicated to bringing the latest news in apps to parents everywhere. The iMums has a special needs section and also update on free apps available throughout the year.

Check out online…

Songs, nursery rhymes, story time, jokes, yoga, meditation and lullabies to soothe all night long: this radio station is dedicated to entertaining and relaxing children. Live stream: download from the App Store or Google Play.

On Facebook…

Apple iTunes Store www.apple.com/au/accessibility Apple is pioneering technology accessible to all. Check out how the amazing power of technology can help those with a disability work, create, communicate, exercise and be entertained.

Special needs kids, Australia www.facebook.com/groups/specialneedskidsnsw A closed group filled with people who care for someone with special needs. No judgment, no selling – just a very diverse group that offers advice and compassion when needed.

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