Source Kids Autumn 2019

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AUTUMN 2019

y p a r The THE

ISSUE

SPEECH THERAPY HOW IT CAN HELP

ABC OF THERAPY

INTENSIVE THERAPY EXPLAINED NDIS AND THERAPY

YOUR DREAM SENSORY ROOM

OUT OF THE DARKNESS

SELF, PLAN OR AGENCY?

Demystifying OT |

Home therapy tips 3 PARENTING JOURNEYS OF STRENGTH, RESILIENCE AND ADVOCACY

Getting the best early intervention outcomes

PLUS: SENSORY SPACES

In association with

HOW TO MANAGE YOUR NDIS PLAN

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RARE VOICES AUSTRALIA: FAIR FOR RARE

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BATHROOM AIDS REVIEW

Clinically sound, innovative design and exceptional value.

Even though I’m differe nt—like the tomato—as a person with Down syndrome, my lovable and outgoin g personality and strong character mak e me just as special as everyone else. I gues s I am the special “tomato” in our family ’s garden!

– Carrie Bergeron, foun der Special Tomato

FOR SCHOOL, FOR HOME & ON THE GO Soft-Touch® Material The Soft-Touch® material outer skin prevents the products from peeling or tearing and also prevents liquids from penetrating the core. It is cool and smooth reducing the possibility of children’s skin sticking to the seating surface.

Safety Concern With over 35 years of manufacturing pediatric seating and positioning systems, our products are safe and easy to use while providing a latex-free contact surface. The contoured designs of our products provide a large surface area for distributing pressure which reduces the risk of skin shear and breakdown.

Design and Function Hand-crafted in upstate New York, the Special Tomato® products are designed with the needs of the user and care provider in mind. The superior Soft-Touch® materials are very durable and easy to clean. We stand behind the quality of our products by offering up to a 5 year warranty on most of our products.

fiveyear warranty

Visit www.dejay.com.au or contact us at therapy@dejay.com.au to speak with your local Special Tomato partner.

Discover our specialist disability services for those you value most.

As a registered NDIS provider, we have the specialist disability services you need for your loved one. From Behaviour Support Specialists to Occupational Therapists to Speech Pathologists, we have 100s of dedicated staff to provide the services you’re looking for. You’ll find them close by, with over 35 locations across NSW, SA, ACT and the Gold Coast.

When that moment comes, we’re here.

1800 236 762

benevolent.org.au

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inside FEATURES & ARTICLES

8 Out of the darkness – 3 parenting journeys of strength, resilience and advocacy

SLEEPING BAG LINER

SPECIAL FEATURE - THERAPY

Brolly Sheets had so many requests for a waterproof sleeping bag liner so they got making! Imagine two layers of cotton jersey bonded together with a waterproof membrane in the middle. These liners are 170cm x 70cm and fit inside most child standard sleeping bags. If your child wets, or ‘wraps themselves around’, the sleeping bag will still be protected.

Another key benefit to a waterproof liner – ground moisture will never reach the sleeper!

12 Tara Thompson on home therapy and how it helped her daughter 15

Top tips for therapy at home

18

The ABC of therapy

www.brollysheets.com.au

23 Things a speech therapist can help with 26 Intensive therapy – what is it and when should it be used?

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Therapy & the NDIS

32

Every child every possibility

35 Demystifying occupational therapy for kids and at home tips!

36

Setting goals for a child with autism

42 Let’s talk sense-ory – what would your dream sensory room look like?

46 Self, plan or agency? How to manage your NDIS plan 56

Sensory spaces

58

Making play more inclusive

60

Making it ‘fair for rare’

WONDER SHEET Have you heard of this amazing fitted sheet? It’s called the Wonder Sheet and it can make turning your child in bed so much easier. It reduces the effort required as you can now slide them or they can move themselves by sliding their hips without having to lift. Less pain and less effort. www.neeki.com.au

SQUIGGLES EARLY ACTIVITY SYSTEM

REGULARS 4

We Love

6

Welcome

39

What's on calendar

51

Bathroom Aids review

54

Family profile – the Holland family

79

Competition corner

The LECKEY Squiggles Early Activity System is a modular floor-based early intervention postural support mat to enhance and encourage muscle and bone development in babies and young infants.

Its use of bright rolls, wedges, straps and supports will have your child giggling away at playtime!

www.sunrisemedical.com.au

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SOURCE KIDS

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WE LOVE

FEATURE PRODUCT

SECRET AGENT SOCIETY The Secret Agent Society, known as SAS, is a computer game pack and program helping kids age 8-12 years crack the code on emotions and friendships. These junior detectives are equipped with the skills to feel happier, calmer and braver while making new friends. It is evidencebased and captivating, making this program one of the most successful of its kind. www.sst-institute.net

AUSSIE ALLERGY MUM We really do love passionate, energetic members of the community making a difference and this mum is certainly one of them. Caroline was thrown into a world of allergies with her youngest daughter and since then has hosted a support network made up of a blog full of information, stories and inspiration; a library of free resources; a hub for mums and she also runs workshops.

If your child has allergies we urge you to check out www.aussieallergymum.com

Shapeeze is a fun and educational skill building activity kit which introduces children to numeracy and literacy whilst helping to advance fine motor skills, boost self-confidence and give children a real sense of achievement.

Developed by Australian mum Simone Crighton in consultation with qualified pre-school teachers and occupational therapists, Shapeeze offers an entertaining form of occupational therapy.

Shapeeze is a return to the traditional, self-directed activities of handwriting, colouring, gluing and sticking. Children learn to identify letters of the alphabet, numbers, colours, shapes and sizes, helping to increase attention span and build problem-solving skills whilst encouraging independence and creativity. Visually simple designs help minimise distraction, triangular barrelled pencils encourage correct hand positioning and engaging tasks help children develop vital communication and writing skills.

Shapeeze offers ageappropriate options and is travel friendly, complete with all of the elements required to create and learn at home or on the go! www.shapeeze.com.au

CARING CLOTHING Caring Clothing is turning heads, not just for its fashionable and comfortable attire, but also for its dedication and business practices. The concept is well-wearing adaptive clothing for children, teens and adults who have restrictive mobility due to disability, illness or injury. Caring Clothing is a registered NDIS provider and adaptive clothing is funded under consumables in Assistive Products Personal Care. www.caringclothing.com.au

!$

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welcome

TO SOURCE KIDS

ISSUE 19

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AUTUMN 2019

And welcome to our first issue hot off the press for 2019!

SOURCE KIDS LIMITED

I don’t know about you but after our summer issue and all the inspo to get organised for the new year, I was pumped and ready to tackle 2019 Kondo-style (she wasn’t a ‘household’ name – pardon the pun – in time for our summer issue or we would have featured her!). However, the reality of special needs parenting meant that my planned attempt to call on my inner super(organised)woman powers went to the wayside as I prioritised parenting – I wasn’t given a choice.

Send all letters and submissions to: editor@sourcekids.com.au

As you would know if you follow the Source Kids Instagram feed (if you don’t – follow now @sourcekidsmagazine), I welcomed my third child, a son Arlo, into the world at the end of November last year. Our loved up, newborn bubble didn’t last long however as our daughter crashed at the speed of lightning and wound up in ICU on a ventilator a week after Arlo’s birth.

ADVERTISING

Like many of your children, my daughter is non-verbal and her inability to communicate the severity of her condition meant she ended up in emergency with exceptionally low oxygen saturation levels and in a critical condition. Driving to the hospital, I really had no idea of how dangerously ill she had become until the early hours in the morning when she was put on a ventilator and things were touch and go and remained that way for a few days. She suffered multiple organ failure; with her kidneys and liver failing due to her condition and other factors.

Carmen Smith - 0438 847 696 carmen@sourcekids.com.au

I’ll shorten the story by saying that our daughter is fine – although recovering slowly; when I find a few minutes I’ll write a blog post about our journey. It was harrowing – but the reason I share this glimpse into our lives is to a) reinforce that we (mostly) have no control over what happens with our children, b) we all have great intentions but they don’t always eventuate, c) sh*t happens and we are all fricking superwomen (and supermen) just for surviving and d) we are not alone. I couldn’t keep up with the messages from friends and the support from my amazing SK team during that time who held down the fort and made sure everything kept going while I went MIA.

Nicole Davis nicole@sourcekids.com.au

After all this I have a renewed view of 2019 and I have no resolutions other than focusing on ‘health, wellbeing and happiness’ for my family. I am pumped about the year ahead and those candid moments of watching, hugging and enjoying every moment with my kids, as you just don’t know what tomorrow might bring. Sounds a little dark to kick off the year I know, but hey, this is life and special needs parenting isn’t all roses and pretty posts about how great things are! Source Kids is delivered by the most amazing bunch of women who all have kids with special needs – we are all on this journey with you and we are ALL about creating a community you can laugh, cry and share with and help each other up when times are tough.

So, roll on 2019 - we have some amazing things planned at Source Kids looking at how we can continue to build an incredible community of special needs parents, carers and professionals. We’re looking forward to taking you on this ride with us!

I’ve hijacked this editor’s note and I haven’t even mentioned Autumn yet…. it’s awesome, trust me, so read on!

Emma

www.sourcekids.com.au

WRITERS AND CONTRIBUTORS Nicole Davis, Rachel Williams, Emma Price, Naomi Sirianni, Joelle Kelly, Elise Watts, Stuart Kruger, Tara Thomson, Kylie Martin, Elizabeth Farsi, Trish Hanna, Sophia Goodwin, Christine Lee and Alli Holland.

BUSINESS DEVELOPMENT MANAGER Naomi Sirianni – 0447 755 043 naomi@sourcekids.com.au ADVERTISING

Renee Swannack – 0499 017 354 renee@sourcekids.com.au

DIGITAL CONTENT EDITOR

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

PUBLISHER/CEO Emma Price Editorial and advertising in Source Kids is based on material, written and verbal, provided by contributors and advertisers. No responsibility is taken for errors or omissions, and opinions expressed do not necessarily reflect those of the publisher. All material in Source Kids is subject to copyright provisions.

No part of this publication may be reproduced without written permission by the publisher.

DISTRIBUTION Source Kids is distributed through therapy centres, hospitals, paediatricians, special needs schools and early intervention centres.

For distribution enquires, contact info@ sourcekids.com.au

Emma Price

CEO/FOUNDER 6

PO Box 690, Noosaville QLD 4566 ABN: 36 614 552 171

ISSUE 19

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we love

SOURCE KIDS

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WE LOVE

NEURONODE

BY CONTROL BIONICS The NeuroNode System and NeuroNode Trilogy are the latest access and communication solutions for children and adults with physical limitations and loss of speech.

At the heart of these newly released systems is the NeuroNode 3.0, the latest generation of the world’s leading wearable, wireless, EMG control device. Combining the power of its EMG + new 3D spatial control the NeuroNode 3.0 is changing lives across the globe! Amazing stuff… www.controlbionics.com

DISCOVERY NATURE PLAY HIDEAWAY The Discovery® Nature Play Hideaway is NEW to the Plum Play® Discovery® range! The unique shape and construction brings 360 degree feature rich play and the love of the forest to any garden landscape. The cleverly-crafted design features bamboo wind chimes and guttering, a swinging letter box and even a built-in planter pot; all perfect additions to help shape the future nature-lovers of our generation. There’s no need for rules in this den, children can create mud pies on the counter and write their recipes on the easy clean clear painting screen. www.plumplay.com.au

JOSH THE ROBOT Join the adventure as Josh the Robot teaches the other toys the important lessons of kindness, including others and that it’s ok to be different. Find out how Josh finally gains acceptance and makes new friends… and learn what makes Josh the Robot so special. Written and Illustrated by Down syndrome author Peter Rowe. www.peter-rowe.com.au

!$

Keeley’s Cause

Keeley’s Cause was created by a 13-year-old girl in Victoria who has autism and an intellectual disability. The aim – to provide iPads to children across Victoria also diagnosed with autism or an intellectual disability. This cause enhances each child’s abilities in education, communicating and interacting with peers. In 12 months Keeley has presented 48 iPads and raised $29,887 through donations, fundraising and sponsorships. Keep up the great work, Keeley! www.keeleyscause.org.au

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FEATURE

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THE DAY MY LIFE CHANGED

out of the darkness

In association with

BY RACHEL WILLIAMS

3 PARENTING JOURNEYS OF STRENGTH, RESILIENCE AND ADVOCACY FROM ANGER, FEAR AND RESENTMENT TO JOURNEYS OF STRENGTH, RESILIENCE AND ADVOCACY, THE FOLLOWING THREE PARENTS ARE INSPIRATIONAL IN THEIR ENDEAVOUR TO IMPROVE THE LIVES OF THEIR CHILDREN. Their lives were all changed in varying degrees as a result of disability.

Finding positives in at times harrowing moments is testament to their character and resolve.

They’re examples of the everyday challenge many people face in the battle to make the world a better place by fighting against injustice and advocating for others.

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When you are told your baby will be born with Down syndrome and to expect her to die in-utero because of complications, you could be forgiven for falling into a heap.

But Joelle Kelly has turned her initial anger and shame into a support network reaching across the globe.

Joelle had two healthy older children, Max, now 15 and Tallara, now 17, but longed for a third baby with husband Lewis to complete their family.

“At the 1:2 chance I was given of having a baby with Down syndrome when I was 12 weeks I was devastated, angry at myself for trying for another baby and had a lot of shame.... coupled with still loving and feeling utter sadness for my baby,” Joelle recalls.

“A week later when we were told she would pass away due to hydrops (fluid accumulation in the body) it put the diagnosis in perspective.”

Since the birth of Josee six years ago, the family has been bold in its ambition to change people’s perspectives about disability.

“Today I am ashamed by how I felt,” admits Joelle.

“I had been influenced by society’s perception of Down syndrome and I didn’t even know! It made and still makes me angry that we are subtly and not so subtly sent negative messages throughout our lives about disability.

“If anything, I have learnt how to be resilient in the face of society’s negativity and outdated attitudes towards disability.”

Joelle says parenting each of her children has changed her in a positive manner.

“Parenting is a beautiful blend of love, pain, hard times, joy, sadness, and so much more. For any child. Each of my children has changed me in different ways.

“For Josee, it’s possibly just been more public with her being well known.”

That public profile has been developed since Joelle started a Facebook page for Josee when she was 6 weeks old to detail her progress.

“It quickly became a way I could reach other mums with a prenatal diagnosis for their unborn baby too,” she says.

“It’s grown to a global following with a reach of well over 200,00 with almost 25k followers.

We don’t post as much up to date information on Josee right now as she’s started school and for her

www.sourcekids.com.au

STUART KRUGER IS HUMBLED TO BE REFERRED TO AS A DISABILITY ADVOCATE, A ROLE UNWITTINGLY DEVELOPED OUT OF FRUSTRATION FOR THE CIRCUMSTANCES HE FOUND HIMSELF AND HIS FAMILY IN. With a passion for helping other families, his gentle guidance and honest advice is helping break down barriers for those within the special needs sphere.

Stuart’s son Tyson, 7, was diagnosed with severe autism when he was nearly 3.

“We realised something wasn’t quite typical when he wouldn’t respond to his name, yet would run over to listen to a song on TV, or he would constantly flip plastic cups regularly,” recalls Stuart, who also has a neurotypical four-year-old daughter, Indigo.

“We realised his severity aged 4 when we enrolled him in intensive early intervention. own privacy, but we do keep her ‘fans’ up to date where we can! “ Joelle has also established T21 Mum Australia – connecting 750 mums across Australia who have Down syndrome children.

“It’s been an honour to see the connections that have happened through T21 Mum and I am so proud to have connected mums nationally in ways that haven’t been done before in Australia,” she says.

“Through Josee’s Journey and T21 Mum, I’ve seen other mums and parents rise to advocate and educate in amazing and unique ways. We often joke that we have a ‘T21 Mum Army’ who can back any project a mum is starting or help each other out in times of need.”

Now a board director for Down Syndrome QLD, Joelle is putting her advocacy skills and her experience to good use.

“As I always say, I wouldn’t change Josee for the world but I would change the world for her!”

But it sounds like Josee - who is in grade one at a mainstream school and also enjoys tennis, swimming and music – is doing a pretty good job of that herself.

“Her motto on her page is ‘changing hearts, changing minds, wherever she goes’ and we feel that just by living her ordinary life she positively changes outdated stigma and beliefs.

“I personally went into problem solving mode and quickly got frustrated with a very clinical ‘this is what autism is’ view, when what I was hoping to get was ‘this is what it may be like for you, as a family’.

“I got quite angry at times, I felt very lonely at times, and then about 12 months into our journey, I decided that the best thing to do, is step forward – every single time.

“I now see the stressful moment as an ‘event’ – and then make the most positive and productive intervention choice that I know how. If I don’t know how, or it doesn’t work, then I learn the skill that may help next time. It is just an event.”

And, he confirms, it is “ok, to not be ok at times.”

Stuart says he never personalised the situation with a ‘why us’ introspection but did query what could have been for his son without the disorder.

“He is a big kid, from a sporting family and it hurt that he may not ever be able to take up a ball sport and put his big frame to use against the All Blacks,” Stuart muses.

“Our ‘let’s do something bigger than just us’ moment came when we met many families who were seemingly less supported than ours.”

Enter Helpa.App, a digital tool to help support families with special needs children.

“Our goal is to help families and their support providers remain engaged, have a place to store info and moments that matter, and make these interactions available via in-app video chat and messaging,” explains Stuart.

“Fundamentally, we want to help the child, by giving the family access to as much on-demand and relevant support as possible.”

Conversation is a powerful catalyst for change.

Stuart says Tyson has changed him as a person – his new-found selflessness encouraged him to leave the corporate world as a technology executive in healthcare to take on Helpa.App full time.

“I am so much more patient and humble. I feel it is a privilege and duty to make a difference to families going through something similar as it takes enormous courage to get through each day on these journeys.

“I would be truly humbled to be seen as a disability advocate, though I am unsure if that is the case.

“I am, however, unapologetically provocative toward support for the ‘family’.

“There are very few folk who set policy that have walked a day in our shoes. So, my goal, personally, is to get as many families using Helpa.

App, take that evidence of what they deal with and the type of supports they require, and get it into policy.”

Helpa.App partners with the Digital Health Cooperative Research Centre – providing an opportunity to have evidence that supports the app’s goal of instigating change.

Stuart says that despite a greater awareness about special needs children in the community, there are still daily battles with ignorance.

“There is more acceptance when realisation occurs, but often, the judgement comes beforehand and this hurts,” he says.

“The NDIS is doing well to improve awareness and supports, and we are pleased that Helpa.

App is able to play a role in helping families and support providers.”

“She lives life with an enthusiasm most people never attain.”

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THE LIVES OF ELISE WATTS AND HER HUSBAND BARRY WERE TURNED UPSIDE DOWN WHEN, WHILE ON THEIR HONEYMOON, THEY LEARNT THAT THEIR BABY BOY BOBBY HAD ENDURED ABUSE BY A FAMILY MEMBER AND WOULD, QUITE POSSIBLY, NOT SURVIVE. The anger Elise still feels is raw and deep set. But the quest to ensure the spotlight on childhood abuse is magnified and legislation enacted to prevent pain for other families is guiding Elise forward.

Bobby’s story is hard to fathom. To hear Elise detail his transformation from a happy seven-month-old – “the final piece to the family’s puzzle” – to having his life support turned off, is gut wrenching.

Bobby was left with his Aunty and non-biological Uncle while Elise and Baz holidayed after their nuptials.

“The day we left for our honeymoon I was apprehensive about leaving the kids but pushed it to the back of my mind knowing that they would be safe in the care of family who we trusted whole heartedly,” Elise recalls.

“Three days later we received the call that brought our world crashing down around us.”

Bobby had been physically abused and doctors warned he would be in a vegetative state if he survived.

“We were in shock, we were petrified,” she says.

“The day the doctors advised us that it would be more humane if Bobby were to pass away was horrific.”

He was christened in ICU and the family said goodbye.

“The machines were turned off and instantly Bobby turned blue,” Elise recounts.

“Then as if someone blew a breath of air into his lungs Bobby miraculously started breathing on his own. I think the doctor was as shocked as we were relieved.”

Bobby was diagnosed with quadriplegic dystonic cerebral palsy, cortical visual impairment and epilepsy.’’

Their lives will never be the same.

“Our days consist of multiple medication and therapies such as physio, speech and vision,” details Elise.

“We try to arm ourselves with the knowledge and strength we need to help Bobby with every aspect of his life, from his physical ability to his cognitive ability and advocacy.

“Bobby has become stable and is exceeding everyone's expectations – attending mainstream day care.”

Bobby’s attacker, Andrew Nolan, is serving 12.5 years in jail after pleading guilty to Grievous Bodily Harm.

Elise says the family, which also includes step-sister Gabbie and sister Olivia, was forced to find new ways to be happy again after the incident.

“We always say that, with the right support, Bobby can do whatever his heart desires,” she says.

“So far he has surfed, done ‘I-fly’, gone on rides, gone to concerts and met his favourite singers.

Bobby has even joined an all-abilities cheer team.

There is nothing this kiddo won’t do!”

Elise wants to use their story as a tool to promote improved sentencing laws for child abuse and aims to write a book.

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She says support services were lacking when they faced their ordeal and she has since established a private Facebook group for parents and carers of abused children.

Among the anger she still feels, Bobby’s amazing strength to survive gives the family hope.

“As a person I have changed a bit. I have learnt to not completely trust everyone and that is including people I have known for a very long time,” she says.

“Bobby's disability has opened my eyes to a world that was unknown to me – I've learnt that we should never take things for granted even things such as the ability to move our bodies independently.

“Life is very different now but each day is also a blessing. We find joy in the simplest of moments which so many take for granted.

“We laugh and we love so fiercely and we have learnt that within a blink of an eye everything can change.”

www.sourcekids.com.au

SPECIAL FEATURE

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BY RACHEL WILLIAMS

THERAPY

HOME TARA THOMPSON ON:

y p a r The

AND HOW IT HELPED HER DAUGHTER WHEN FACED WITH THE PROSPECT OF HAVING A DAUGHTER WHO WOULD NEVER BE ABLE TO CRAWL, TARA THOMPSON TOOK THINGS INTO HER OWN HANDS, QUITE LITERALLY.

Tara says.

The popular blogger realised the importance of home therapy to help little Willow in her fight against the debilitating effects of cerebral palsy.

Willow had her first intense seizure at 3, and is now on daily medication. Six months later she was also diagnosed with autism.

Willow was born prematurely in emergency circumstances and to say the disability diagnosis came as a shock to Tara and her husband Kirk, both 33, is an understatement.

Tara describes the initial therapy sessions for Willow as overwhelming and daunting.

Before becoming a mum to a perfectly healthy daughter, Ava, now 6, Tara had been studying a Bachelor of Primary Teaching and working as an early childhood educator. She also opened up a family day care to allow herself to continue studying after Ava was born.

Willow, now 4, arrived at 29 weeks when Tara was finalising her degree.

“I had a bleed and a few pains and within a couple of hours had an emergency Caesarean.

My placenta ruptured and they just got her out in time,” details Tara.

“We knew my placenta was close to my cervix but the doctors weren’t worried, we had no idea I would go into premature labour or that Willow would have special needs.”

Willow spent the first 6 weeks of her life in the NICU, during which time a brain scan showed damage.

“A couple of months in it was evident that she was behind in all of the typical baby milestones and her right hand was constantly in a fisted position,” 12

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Willow was officially diagnosed with cerebral palsy at seven months old.

“Although we knew that this was more than likely coming, it was still a huge shock and the first few years were quite tough to fully accept and come to terms with,” admits Tara.

“There was so much to work on, so many skills to practice and a heap of therapy to do at home,” recalls Tara.

“With another child I found it tricky to fit in and placed a lot of pressure on myself to get it done.”

Tara’s teaching background ensured she was well equipped to facilitate learning outcomes, so she implemented her own system.

“Play was now our aim and therapy was a bonus.

Therapy wasn’t something just for Willow it was fun, creative and playful so Ava could join in too.

“I knew how crucial those first years were and even more so for children with additional needs. Early intervention is all about using time effectively and not allowing it to go by without fighting against the damage to the brain in order to retrain neural connections.

“I know with 100% certainty that Willow has come such a long way because of the therapy we did and I am so grateful that I stuck to home therapy and making it my mission to give her the best possible start.”

Tara recalls the moment that crystalised her www.sourcekids.com.au

“ I KNOW WITH 100% CERTAINTY THAT WILLOW HAS COME SUCH A LONG WAY BECAUSE OF THE THERAPY WE DID AND I AM SO GRATEFUL THAT I STUCK TO HOME THERAPY AND MAKING IT MY MISSION TO GIVE HER THE BEST POSSIBLE START.”

resolve to help at home.

“Her therapist said she thought the way Willow’s body was affected would probably make it too difficult for her to crawl and she stopped making it a focus at appointments,” Tara remembers.

“But this didn’t sit well with me and knew we could keep trying. There wasn’t any harm in still trying.

“Weekly and sometimes daily we practiced crawling and skills to assist crawling and at 22 months of age Willow crawled. She crawls with reciprocal movements and now has even begun knee walking.”

While Willow still participated in – or “tolerated” – occupational therapy and physiotherapy appointments, the home approach appeared to pay the most dividends.

“Willow thrived and I began sharing our journey publicly on our Instagram page so that others could use ideas for home therapy too,” says Tara, who also welcomed another healthy daughter into the household, little Indy, who is now 14 months old.

“Four years in and therapy at home is still very much a part of our lives and Indy joins in too. Willow really enjoys it and actually asks if we will do therapy.”

“While she will always do the more traditional therapies she also does swimming, gymnastics, yoga, and horse riding in special needs classes or one-on-one and they all have amazing therapeutic benefits – but to Willow they are just fun activities that all kids do.”

Up to three home therapy sessions are scheduled each week.

“I have therapy toys and cupboards ready to go and if I ever think of an idea I write it down.

“ I RECYCLE A LOT OF THINGS. FOR EXAMPLE, I USE RECYCLED YOGHURT POUCH LIDS AND BLUTACK THEM ON THE WALL IN A LINE AT A HEIGHT THAT WILLOW CAN LIFT HER LEG WHILE HOLDING ON TO THE WALL TO KNOCK THEM OFF." 14

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A popular two-handed therapy idea we use is where I put things inside a kitchen whisk and Willow has to try to hold onto the whisk handle with her affected hand so that her functional hand is free to pull the items out.”

Tara uses the analogy of training for a marathon that never ends to describe their journey.

Later this year Willow will undergo Selective Dorsal Rhizotomy surgery, an intensive neurosurgical technique that involves cutting the sensory nerve roots at the spinal cord level.

“While it isn’t a cure for cerebral palsy it will take some of the stiffness away and allow her to have more freedom and comfort to move,” Tara says.

“Therapy after this operation will be very intense for at least a year, more so than we have ever committed to before – daily therapy sessions at home again and daily appointments to get her strength back – but it will be worth it in the long run.”

back and give yourself a break,” she advises.

“Write a timetable, concentrate on just one of two things a week, slot in a couple of blocks or work on a just a little every day.

“There is no right way to approach therapy and the world of early intervention. But it doesn’t have to be a chore. Therapy can simply just be play.Get creative, make it fun and soon enough those overwhelming and daunting feelings won’t be as much of a burden and before you know it, it will become natural and easy."

So, with that challenge ahead for the family, Tara says it’s important not to get overwhelmed.

“As soon as it gets too overwhelming take a step www.sourcekids.com.au

BY TARA THOMPSON

TOP TIPS FOR

therapy at home I REMEMBER LIKE IT WAS YESTERDAY LEAVING MY DAUGHTERS FIRST OCCUPATIONAL THERAPY APPOINTMENT AND TRYING TO WRAP MY HEAD AROUND FITTING HOME THERAPY IN. AS THE MONTHS WENT ON, THE LIST OF SKILLS TO PRACTICE GREW AND GREW. I HAD THIS FRUSTRATED BABY THAT JUST DIDN’T WANT TO BE A PART OF IT, I HAD MY OTHER DAUGHTER WHO DID WANT TO BE INVOLVED AND MY BRAIN WAS IN A CONSTANT FOG OF WORRYING HOW I WOULD FIT IT ALL IN. Well fast forward 3 years and I now have a 4-year-old that asks if we can do therapy at home. It has played a huge part of our faimily's life over the years and is something that is no longer seen as this requirement that has to be squeezed in, we would not have been able to keep it up if it was.

Here are some of my top tips for therapy at home that have helped us find our balance.

By incorporating all or some of these ideas I truly think therapy can begin to become more fun and less daunting. Find what works for you and your child, the right way is your way!

IT’S OK TO TAKE A BREAK If you are finding that therapy is taking its toll, take a break. If your child is showing signs of stress, take a break. If a lot is happening in your life, take a break. I used to feel so guilty about this but have learnt over the years that breaks are very much needed and more often than not my daughter learns something new within this time. Their little brains and bodies need rest and time to process things you have been working on.

NO NEED TO SPEND BIG In the early days I thought the way best way to keep Willow motivated was through buying the flash therapy toys. I soon realised that while these are great the novelty soon wears off and it is too expensive to keep up. Instead, use items around the house; recycle things and stock up on cheap supplies and craft items from the dollar store. Put holes in shoeboxes to post things, use Tupperware containers for water play; we have even used socks for a throwing activity. Taking this approach means you will be able to come up with more activities instead of expecting your child to play with the same therapy toys time and time again.

FIND WHAT WORKS FOR YOU AND YOUR CHILD There might be a certain time of the day that is easiest for therapy to be implemented or your child may be at their happiest first thing in the morning. Maybe you prefer having one or two solid sessions a week or maybe short stints throughout the day or week might work best.

There is no right way, that’s the beauty of it. Remember every little bit adds up.

THERAPY ENVIRONMENT Have a place where you do therapy regularly. When we use my daughter’s therapy table I position it in the same spot where there aren’t any distractions. This happens to be against the wall we use for most of our physio play too. This doesn’t mean it is the only spot where therapy happens but it’s nice that we have a dedicated play spot.

INCLUDE SIBLINGS Don’t be afraid to include siblings. Think of something they can both do, if it isn’t age appropriate, modify it. I have a one-year-old, a four-year-old and a six-year-old and there are always ways that they can be included. Sometimes I let my eldest be the therapist. There will be times when it needs to be one-on-one. This is when I will set up other ‘special’ things for her siblings.

KEEP IT PLAYFUL Keep in mind that therapy is play and play is therapy so learn to approach it this way. Find things your child is interested in and go from there. Think outside the box. Maybe your child loves cars so get creative and let them push the car through shaving cream for some standing play, sensory play or therapy play.

MAKE THERAPY ACTIVITIES SPECIAL Have toys and activities that are packed away that only come out for ‘special’ therapy time.

This helps to create interest and keep it exciting for them.

STAY ORGANISED This is a big one! I have ideas and activities stored away in containers. So, when we are doing therapy all I have to do is choose one. This saves time and limits the stress of figuring out what we are going to do. If we are working on two-handed play I simply grab one of our containers with our bimanual activities. Sure you might not start with much but over the years they will accumulate. I have so many tubs of things to do, our issue is not what will we use for therapy but that I wish we had extra time to use more of all the resources we have built up.

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ABC

THERAPY

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THE ABC OF THERAPY

THE

THERAPY OF

WHEN WE THINK OF THERAPY WE OFTEN DEFAULT TO THE ‘BIG THREE’ OF PHYSIO, SPEECH AND OT – BUT THERE ARE MANY DIFFERENT OPTIONS FOR YOU TO CONSIDER FOR YOUR CHILD, SO WE’VE PUT TOGETHER A QUICK REFERENCE GUIDE TO HELP YOU WITH YOUR RESEARCH.

*Please note that these are not recommendations or endorsements – not all therapies will be covered under the NDIS and some may be more experimental than others. Always consult with your child’s health provider or other trusted professional.

A ABA (APPLIED BEHAVIOUR ANALYSIS)

AUDITORY VERBAL THERAPY

ABA is a set of strategies most commonly used for children on the autism spectrum (but can be used for individuals with other conditions) with a focus on improving specific behaviours including communication, social skills, life skills, selfregulation and self-care. It is based on the belief that human behaviour is influenced by stimuli or events in the environment and behaviour that is followed by positive reactions or consequences is more likely to be repeated.

This is a specialist early intervention programme providing parents with the skills to maximise their deaf child’s speech and language development.

Essentially it teaches a child to develop listening skills through one-to-one therapy and uses the child’s residual hearing along with their assistive devices such as hearing aids, cochlear implants or FM systems.

More info: aussiedeafkids.org.au/decisions.html

More info: abia.net.au/resources/information-kits

ANIMAL ASSISTED THERAPY Animal assisted therapy is used in conjunction with traditional therapies such as occupational therapy, physio and especially psychology services incorporating animals into the treatment plan as a way of motivating, modelling and calming anxiety. Dogs are the most commonly used animal but horses, cats, pigs and even birds have been known to be used as a way of taking advantage of the human animal bond that goes back to our ancestors.

More info: www.andaat.org.au 18

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C CRANIAL OSTEOTHAPY Osteopathy is a hands-on approach to healthcare recognising the link between the structures of the body and the way it works. A cranial osteopath will very gently manipulate areas of the head to reduce tightness and strain. It is primarily a treatment used on babies but a practician can also work with adults, teenagers and children.

More info: www2.osteopathy.org.au

CONSTRAINT INDUCED MOVEMENT THERAPY CiMT is a therapy option targeted at improving upper limb function – particularly children with hemiplegic cerebral palsy. Often delivered as part of a therapy ‘intensive’ – play-based tasks are carried out while constraining movement in the least-affected limb in order to engage and strengthen a child’s affected arm.

More info: cpaustralia.com www.sourcekids.com.au

CUEVAS MEDEK EXERCISE

ENLITEN HARNESS SYSTEM

CME is a method of exercise aimed at provoking improved postural responses in children working towards developmental milestones. A therapist physically manipulates a child to stretch out tight muscles and train the muscles in groups to help the child to gain control over his or her trunk.

Exercises are repeated until the reaction of the brain becomes automatic and the body reacts normally to situations where required to keep its balance.

The Enliten Harness System is more formally known as a “fall-arrest and body-weight-support system”. The harness provides children with independent movement that allows interaction with family, friends and their environment.

More info: www.napacenter.org/our-programs/ cuevas-medek-exercise

D DIR/FLOOR TIME INTERVENTION This is a therapy aimed primarily at children on the autism spectrum or with social/emotional challenges which encourages interaction through play in order to promote social, emotional and intellectual development. During a session, a parent or provider joins in the child’s activities and follows the child’s lead with the emphasis on back and forth play.

More info: www.icdldirectory.com/australia

DANCE THERAPY Dance movement therapy is the use of dance and movement to further the physical, emotional, cognitive, social, functioning of a person. Dance movement therapists combine the elements of dance, movement systems, creative processes, and psychological and scientific theories, to address the specific needs of groups and individuals.

More info: dtaa.org.au

E EARLY INTENSIVE BEHAVIOURAL INTERVENTION Intensive Behavioural Intervention applies the principals of ABA in an intensive setting for children with autism and other neurological conditions to address skills development and appropriate behaviour. It is a highly structured approach for teaching children under the age of five.

More info: raisingchildren.net.au/autism/ therapies-guide/ibi

More info: therapiesforkids.com.au/gobabygoenliten-harness-system

F FARM THERAPY Farms which build on the benefits of animal assisted therapy are starting to pop up around Australia with a range of supervised, structured programs to fit a variety of requirements. A Google search will help you see if there’s a centre near you.

FELDENKRAIS The Feldenkrais method is a type of exercise therapy devised by Moshé Feldenkrais. Trained practitioners use touch, movement, guided imagery and mindful body awareness to stimulate the brain with the aim of making improvements to movement and posture.

More info: www.feldenkrais.org.au

H HABIT-ILE HABIT-ILE (short for Hand Arm Bimanual Intensive Training Including Lower Extremity Training) is an intensive play-based therapy for children who have difficulties with hand and gross motor function. It is suitable for children who have mild to moderate cerebral palsy or similar condition (GMFCS I-III) who can follow instructions and participate in a group environment.

HIPPOTHERAPY Hippotherapy is defined as the use of horse riding or work with horses as a therapeutic or rehabilitative treatment elements of speech, physio and OT can all be incorporated into a session with a specially trained therapist.

More info: www.rda.org.au/hippotherapy.aspx

CONDUCTIVE EDUCATION Conductive Education is not strictly a therapy or treatment but a method of group learning for children with neurological and mobility impairment, which provides opportunities to learn essential life skills and independence in a fun, playful setting.

Physiotherapy, occupational therapy, speech/ language pathology and teaching are combined during group sessions with tasks set to meet the needs of individuals within the group.

More info: research.cerebralpalsy.org.au

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EARLY START DENVER MODEL Early Start Denver Model (ESDM) is a play-based, behavioural, early intervention program for children with autism. It teaches children how communicating with others can help them, so they’re motivated to keep trying.

More info: raisingchildren.net.au/autism/ therapies-guide/early-start-denver-model

HYDROTHERAPY Hydrotherapy is the use of water as part of a treatment programme. With special exercises in a warm pool, hydro can help strength and muscle tone as well as alleviate aches and pains.

A physiotherapist provider will be able to give you information on hydrotherapy sessions and their availability.

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I

O

INTEGRATED LISTENING

OCCUPATIONAL THERAPY

SPEECH THERAPY

The Integrated listening system integrates sound and movement to create a foundation for learning, attention and behaviour. The method is based on the science of neuroplasticity – that is, that the brain grows, changes and creates new pathways in response to stimulation and input from the environment. Practioners take a staged approach, starting with the fundamentals of sensory integration and then extending through more complex cognitive functions, including language, self-expression and social skills.

Occupational therapists are qualified health professionals who work with people of all ages and abilities to do the things they need and want to in all aspects of life, such as taking care of oneself and others, working, volunteering, and participating in hobbies, interests and social events. The primary goal of occupational therapy is to enable people to participate in the occupations of everyday life.

Speech pathologists study, diagnose and treat communication disorders, including difficulties with speaking, listening, understanding language, reading, writing, social skills, stuttering and using voice. They work with people who have difficulty communicating because of developmental delays, stroke, brain injuries, learning disability, intellectual disability, cerebral palsy, dementia and hearing loss, as well as other problems that can affect speech and language.

More info: integratedlistening.com.au

INTENSIVE SUIT THERAPY Suit therapy is an external support system used to provide a child with increased proprioception, joint feedback, correct alignment and awareness of where their body is in space. Suits vary considerably in the amount of support they provide. An increasing number of centres around Australia offer forms of suit therapy including TheraSuit and the NeuroSuit at Napa. Intensive suits are worn in conjunction with a ‘Fun Frame’ or Spider Cage (see below).

L

More info: www.otaus.com.au

P PHYSIOTHERAPY Broadly, physiotherapists use a range of methods to improve movement, increase strength and balance, reduce pain and stiffness, speed up healing and improve overall quality of life.

More info: australian.physio

S SAND THERAPY (SANDPLAY)

LEGO THERAPY A play-based method of therapy for children that often takes place in a group setting. This type of social play promotes social interaction, turn-taking skills, sharing, collaborative problem-solving and the learning of concepts.

More info: plumtree.org.au

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 psyche’s natural capacity for healing.”

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.

More info: http://www.stanza.asn.au

SENSORY INTEGRATION THERAPY

LOVAAS PROGRAM The Lovaas approach is a behaviour treatment model for children with autism, which uses the principals of ABA. Through intensive play-based sessions there is a focus on breaking complex tasks into small achievable steps, rewarding and praising children as they make progress while ignoring ‘difficult’ behaviour.

More info: www.lovaas.com

Music therapy is defined by the Australian Music Therapy Association Inc (AMTA) as a researchbased 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.

More info: www.austmta.org.au

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More info: www.otaus.com.au/find-anoccupational-therapist to find an OT trained in sensory integration.

SOUND THERAPY

MUSIC THERAPY

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Sensory integration therapy aims to help children with sensory processing disorders by exposing them to different sensory experiences in a structured, repetitive way helping children to learn to use their five senses together to interpret sensory information more effectively.

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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.

More info: www.speechpathologyaustralia.org.au

SPIDER CAGE Spider cage is a suspension system, which works with use of belts, elastic cords and is used in conjunction with suit therapy. When using the cage a child will work with a trained physiotherapist to carry out activities such as crawling, standing, jumping etc. with the aim of improving strength, balance, sensory integration, developing a sense of security and mastering respective activities.

V VITALSTIM VitalStim therapy is a treatment for patients suffering from difficulty swallowing or dysphagia.

VitalStim may be used with infants and children suffering from a broad range of diagnosis. It is a non-invasive, external electrical stimulation therapy that uses specifically designed electrodes applied to the muscles of the throat to promote proper swallowing.

More info: napacentre.com.au/our-programs/ vitalstim-and-swallowing-therapy/

W WILBARGER PROTOCOL

Sound therapy has been described as exercise for the ear and the auditory processing and sensory integration centres in the brain.

The Wilbarger protocol involves using a soft plastic surgical brush (under the guidance of a trained therapist) to provide deep pressure and brushing to the skin, followed by joint compressions. This method provides deep stimulation to the nerve endings in the skin and is used to treat children who have sensory processing disorders.

More info: mysoundtherapy.com/what-issound-therapy/children-learning

More info: therapiesforkids.com.au/wilbargertherapressure-brushing-protocol/

www.sourcekids.com.au

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THINGS A SPEECH THERAPIST CAN HELP WITH

BY KYLIE MARTIN

SPEECH PATHOLOGY. IT’S SUCH A VAGUE TERM ISN’T IT? WHEN I TELL PEOPLE WHAT I DO MOST PEOPLE SAY, “OH YOU WORK WITH STUTTERS AND LISPS.” WELL, YES WE DO, BUT WE DO SO MUCH MORE. HERE’S AN INSIGHT INTO THINGS A SPEECH PATHOLOGIST CAN HELP YOU AND YOUR CHILD WITH.

1. STUTTERING Most children go through a phase of dysfluent or bumpy talking as their language develops. Children may repeat sounds, words or phrases. They may get “stuck” and have long pauses or blocks in their speech. These speech characteristics may be accompanied by secondary behaviours (blinking, clicking, tensing of the shoulders and unusual breathing patterns). Parents should seek advice if any dysfluent speech patterns continue on past a week or two or if any secondary behaviours are noted.

2. (LISPS AND) SPEECH SOUNDS Our intelligibility (or ability to be understood by others) is dependent on using the correct sounds in our talking. Children need to be able to move and coordinate their tongue, lips, jaw, palate with their vocal folds and breath appropriately to make their sounds accurately (articulation) and they need to learn the patterns of a particular language that govern the correct use of sounds to convey appropriate meaning (phonology). A speech pathologist can work with your child to show them the steps to make a sound and teach them the processes to use them properly.

3. UNDERSTANDING The technical term we use for this is receptive language or comprehension skills. Children need to understand what words mean and how words go together to be able to grasp meaning from what is said to them or from what they read. Children also need to have a good understanding of concepts, words and how words go together before they are able to use those ideas or words or sentence forms in their own talking.

5. LITERACY The early skills of language development and speech sound development lay the foundation for good literacy development. After children have learnt sounds and words, they start to think about reading and writing. They work out that some sounds are long sounds and some sounds are short sounds, some words start with the same sound as other words and when you say those words together in a sentence they “sound so super silly”. They work out some words are long (they have lots of syllables) and some words rhyme.

With these skills kids learn to sound out words and add meaning to them and read books! Reading and writing are complex tasks and the role of a speech pathologist is to identify where in the chain a child is struggling and strategise at that level to build confidence and skill.

6. FEEDING This is where the name Speech Pathologist is misleading! But yes… we work with feeding too. Being trained in the anatomy and neurology of the head and neck, as well as in learning theory, behaviour management and sensory development, an experienced speech pathologist can help your child along the whole feeding process.

7. FRIENDSHIPS AND SOCIAL SKILLS It’s all well and good to be able to talk but if you don’t know how to use the rules of eye-contact, body space, body language, turn-taking, emotional regulation, negotiation, problem solving, and perspective, talking with other people isn’t going to be as successful as it otherwise could be. Speech Pathologists can help children and families to develop and practice these skills so that relationship building becomes easier.

8. VOICE Children may have voice issues (husky, hoarse, nasally, high pitch, too loud, too soft, or inconsistent quality) related to neurological disorders or damage, vocal misuse and abuse (yelling and shouting) or medical issues. Children with voice disorders often require intensive retraining of how to use the voice safely and effectively.

4. EXPRESSIVE LANGUAGE This is the process of being able to choose the right word and put words together with other words to explain your ideas, needs and wants. In working with language, a speech pathologist will ensure a child has a sound understanding and help a child activate that understanding in a way that enables them to share ideas with the world around them. This may be through spoken language, symbolic language such as iPads, picture boards, talking buttons or sign language.

!$

If you think your child may need support in any of these areas, please contact your local speech pathologist or go to www.speechpathologyaustralia.org.au for more information on how a speech pathologist can help.

Kylie Martin is a speech pathologist at Chatter-boxes Speech Pathology Services.

For advice or information on speech and language development, play, feeding or social communication visit www.chatter-boxes.com.au

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THERAPY

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INTENSIVE THERAPY

INTENSIVE THERAPY WHAT IS IT AND WHEN SHOULD IT BE USED?

BY ELIZABETH FARSI, DIRECTOR OF REHABILITATION, NAPA CENTRE

Intensive therapy is gaining popularity as a treatment option for children, with increasing amounts of research emerging in favour of this model. Previously considered a radical alternative approach to rehabilitation, particularly in paediatrics, children who participate in intensive therapy have shown gains in strength, balance, independence, functional mobility and Gross Motor Function Measure scores more quickly than those participating in traditional models of treatment delivery.

Most simply defined, intensive therapy is therapy of any modality that occurs at a high frequency over a short duration of time. Whereas in a typical model of treatment a child may receive hourly physical, speech and occupational therapies weekly or fortnightly, children who participate in intensive treatment may receive an hour of each of these disciplines 5 days a week for 3 weeks.

Under the intensive model, children are exposed to hundreds if not thousands of repetitions of particular exercises, developmental movements, and/or functional skills over a very short period of time.

With such a broad definition of intensive therapy, many clinics offer different versions of intensive type programming. Quality intensive therapy programs consist of: individualised considerations as to participation and frequency, a multidisciplinary team approach, involvement of the family/caregivers, and continued support through a home exercise program offered upon completion of the program.

Intensive therapy is appropriate, safe, and beneficial for children with a variety of diagnoses such as cerebral palsy, developmental delay, prematurity, stroke, spina bifida, hypo/hypertonia, chromosomal abnormalities, syndromes, acquired brain injuries, developmental coordination disorder, as well as undiagnosed conditions. Children can begin an intensive program younger than one year of age and into young adulthood. There are contra-indications for the different intensive treatments and these should be discussed with a trained practitioner.

Individualised intensive programs are determined based on a child’s age, diagnosis, medical history, parent goals and current level of participation in therapies. With a child’s comprehensive development in mind, NAPA Centre for example provides a multidisciplinary approach to the achievement of a family’s goals, combining physio, occupational and speech therapies. Techniques and tools used in a multidisciplinary approach may include the NeuroSuit®, Spider Cage (body weight support system), Cuevas/MEDEK exercises, Beckman Oral Motor, sensory integration, VitalStim, PROMPT, and developmental feeding techniques.

The NeuroSuit®, which is generally known as a dynamic motion orthosis, is a tool comprised of a top/vest, bottom/shorts, knee pads and shoes, which are 26

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connected by a series of bungees. The NeuroSuit® has three main effects on the individual wearing it: it provides a downward force on the body to increase the upright response, it facilitates correction of minor body alignment deficits, and lastly it provides increased feedback to the joints and muscles to promote body awareness. While wearing the NeuroSuit® children participate in specific exercises and activities aimed at helping them achieve developmental progress; examples of activities include head control exercises, crawling, walking, and/or jumping.

CME (Cuevas MEDEK Exercise) or the Dynamic Method of Kinetic Stimulation (MEDEK) employs the use of specific exercises to promote automatic postural responses against gravity. A key component of this technique is to utilise a diminishing level of assistance during exercises as the child progresses; this means that the professional working on standing with a child may first start by assisting at the child’s trunk, then at their pelvis, then at their thighs, and then their ankles. Exercises start on a table and progress to the floor. There are seven pieces of equipment that can be configured in various ways to challenge the child. Children need to be at least 4 months of age and are typically under 30 kilograms in weight.

Many programs utilise the Spider Cage body weight support system within a treatment program. Given its name from the bungees that support and attach the child to a 3-sided steel frame, the Spider Cage decreases the amount of body weight a child must move against gravity, making activities such as walking and standing much easier. The postural freedom afforded by the Spider Cage often allows a child to experience a level of freedom of movement that they have never before. Treadmill training is frequently an integral activity of a child’s time in the Spider Cage.

The NAPA Centre recommends completing intensive blocks interspersed throughout the year in addition to ongoing physio, occupational and speech therapy, in order to achieve a child’s fullest potential. An effective intensive program uses a multi-disciplinary team approach with the child and family at the centre. If done well, an intensive therapy program can produce quicker results than solely utilising ongoing weekly or fortnightly therapy.

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INTENSIVE THERAPY IS APPROPRIATE, SAFE, AND BENEFICIAL FOR CHILDREN WITH A VARIETY OF DIAGNOSES

Elizabeth Farsi is a qualified Doctor of Physiotherapy and is currently the Director of Rehabilitation at NAPA Centre, which offers both traditional weekly sessions and intensive blocks at its multidisciplinary clinic located in Lane Cove, Sydney. NAPA Centre was established 10 years ago in Los Angeles and now has three clinics worldwide including the LA, Sydney and Boston clinic.

For more information visit www.napacentre.com.au.

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THERAPY

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AND THE NDIS

THERAPY

&

THE NDIS Whether your child is under seven and accesses the NDIS through early intervention or they’re older and a ‘full’ participant, it’s highly likely that you will be requesting funds for therapy as part of your plan. So, what do you need to know about therapy and the NDIS? Read on as we cover off some of the basics for you...

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HOW IS THERAPY REFERRED TO WITHIN THE NDIS?

HOW MUCH SHOULD I PAY FOR A THERAPY SESSION?

Within your plan there are three main categories of supports (the ‘purpose’ of the support) funded through the NDIS – Core supports, Capital supports and Capacity Building supports. Therapy is considered a Capacity Building support – a support that enables a participant to build their skills and independence. In the Capacity Building section of your plan, supports are further broken down by category and therapy comes under the ‘Improved Daily Living’ category which is defined by the NDIS as follows: ‘Assessment, training or therapy to help increase your skills, independence and community participation.

These services can be delivered in groups or individually.

Confusingly, in the NDIS myplace portal Improved Daily Living is referred to as CB Daily Activity.

NDIS registered service providers are bound by the

CAN I USE FUNDS FROM OTHER CAPACITY BUILDING SUPPORTS IF I DON’T HAVE ENOUGH IN MY IMPROVED DAILY LIVING CATEGORY? Unlike Core support funding which is flexible and can be moved around the sub-categories, capacity building support funds cannot be moved from one support category to another. Funding can only be used to purchase approved individual supports that fall within that Capacity Building budget.

WHAT THERAPIES WILL NDIS FUND? To be considered for NDIS funding a support must firstly be considered reasonable and necessary. In the context of therapy, to meet this criteria the NDIS will be looking for information that the support is related to your child’s disability and likely to work and benefit your child. It should represent value for money and importantly, be based on evidence. Evidence-based therapy is therapy that is proven to work in the wider community or based on scientific evidence and data.

maximum limits of the NDIS price guide which can be accessed here – (https://www.ndis.gov.au/providers/ price-guides-and-information). You are free to negotiate a lower rate with an individual provider if you are self or plan managed. If you are self-managed and using a non-NDIS registered provider you are free to pay any price you wish.

The NDIS will set funding based on the price guide so if you do pay more then be aware that your funds may not go as far as you need them to.

HOW SHOULD I REQUEST FUNDING FOR THERAPY IN MY PLAN MEETING? Your request for therapy hours for your child should be backed up by evidence-based reports from relevant professional therapists such as speech therapists, OTs, physiotherapists etc). Most importantly, the reports should be related to your plan goals and set out recommendations for how a particular therapy will help a participant to reach a goal or goals over a 12-month period along with the measures of success.

ADDITIONALLY, THE REPORTS SHOULD: • Include a breakdown of how many hours of support are required to meet a goal within the plan’s 12-month period.

• Be in plain English and easy to read. An NDIS planner should be able to pick up a report and understand at the outset the content of a report and how this relates to the participant. Recommendations are one of the most important parts of a therapy report so a clearly labelled recommendations section will guide a planner to what is being proposed for the participant.

• Information should be included on how the diagnosis

WHO CAN PROVIDE THERAPY TO MY CHILD? The NDIS empowers you to choose the best provider to help your child achieve their goals. They refer to any person, business or organisation that delivers funded services or products to a participant as a Service Provider.

barriers are there that the therapy could overcome etc.) and how the therapy will work to address any issues with a focus on how the support is reasonable and necessary and provides value for money. The report should also state the risk of not providing the recommended supports.

Providers who are registered with the NDIS are called ‘NDIS registered providers’. They meet strict government quality and safety requirements. If your NDIS funding is NDIA-managed, you can only use NDIS registered providers to deliver your services.

• If a therapist has previously been working with a child

Participants who self-manage or have a Plan Manager to manage their NDIS plan, can use NDIS registered providers and non-registered providers. (see our article on page 46 for more information on the different management options).

against goals (is the therapy working?), goals for the

If your child is under seven you will most likely have worked with an Early Intervention provider to put your plan together. The NDIS has engaged Early Childhood Partners across Australia to deliver the ECEI approach. You can work with this provider to utilise the capacity building funds for therapy in your budget or you can also identify other providers either through the myplace portal (to find registered providers) or independently if you are self or plan managed.

!$

affects a child’s day (what can’t they currently do, what

(especially important for plan reviews) the report should include strategies that have previously been implemented and a history of outcomes. At an annual plan review the report should state progress made coming year and how strategies may differ from the previous year.

WHAT ELSE SHOULD I CONSIDER WHEN REQUESTING FUNDING FOR THERAPY? Along with the funding you are requesting for therapy hours, you should also consider the funding you may require for ‘extras’ such as therapist travel time, report writing and equipment assessments and fittings which also come out of the same budget section.

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Yael’s Story

Image courtesy of Steve Waugh Foundation, photographer Salty Dingo

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He retired a few years back and was struck with an aggressive cancer, which he totally overcame and I have never met anyone who managed to breeze through the radiation therapy like he did. At the time, he From left: Yael, Harry, Maxi had just become a grandfather to twin girls, I think that gave him the inner fight he needed to overcome the cancer. He doted over them like they were the most precious things this planet holds.

Sadly, my father now has Alzheimer’s and Parkinson’s and he no longer can do many of those great things. We are so blessed he is still with us and like always, every time he sees me, his face lights up with love from ear to ear. He gives me unconditional love, the only love worth having.

On top of being a genius, without my father’s encouragement, intellect and wisdom, Maxi may not be with us today, he was what drove me to seek answers 5 years ago when all hope was lost, together my dad and me, we took on the world and found a cure to keep our boy alive. A truly remarkable achievement I remind him of often and he does still remember.

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The VHP team always treats us with dignity and understanding. There were times I was so frazzled I didn’t know what I needed when I phoned, but after a 10 minute debrief on life, we were able to not only find a suitable product, but really a solution to Maxi’s needs at the time.

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Over the years what I’ve loved about the VHP experience has always been their reliable service. With so many variables in life, its nice to know something will happen when they say it will. With prompt deliveries and genuine care, they were also able to link us in with other services we weren’t aware of, which has helped us tremendously.

In recent times VHP were invaluable in the NDIS process, they were able to assist with quotes for my plan review, help me understand value for money and stretch my son’s budget to ensure Maxi doesn’t go without his consumables we cant live without.

I personally recommend VHP If you’re looking for a real-people service with someone who gets you.

Yael Cohn xx Yael, Maxi and their family would like to ackknowledge the below organisations for their support. If you would like to donate or find out more visit:

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THERAPY

|

A GUIDE TO EARLY CHILDHOOD INTERVENTION

every child

every possibility

BY TRISH HANNA

Chair, Early Childhood Intervention Australia

A GUIDE TO GETTING THE BEST EARLY CHILDHOOD INTERVENTION OUTCOMES FOR YOUR CHILD 32

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HOW OFTEN ARE PARENTS/ CARERS TOLD THAT THEY ARE THE EXPERTS AND KNOW THEIR CHILDREN BETTER THAN ANYONE ELSE? THIS IS A FREQUENT COMMENT MADE BY WELL-MEANING PROFESSIONALS IN AN ATTEMPT TO BUILD THE CONFIDENCE OF PARENTS/CARERS AT A TIME WHEN THEY MAY BE FEELING VULNERABLE AND A LITTLE BIT OVERWHELMED. Of course they are right, parents/carers do know their children best, but when faced with the prospect of their child needing ongoing therapy, it’s the expert advice that is needed. Parents/carers will know what they want their child to be able to do, and it’s the therapist’s role to assist with the ‘how’ of achieving those goals.

It is a well-known fact that for all children, the supports received early in life can potentially reduce the amount of supports needed later in life. This is referred to as early childhood intervention. Early Childhood Intervention (ECI) provides specialised support and services for young children with developmental delay or disability and their families.

The aim of ECI is to ensure that parents and other important adults in the child’s life can provide children with experiences and opportunities that help them gain and use the skills they need to participate meaningfully in their everyday lives.

Accessing therapy for children could be compared with learning a musical instrument – an hour lesson once a week might set the foundation for learning, but the practice in between lessons makes the biggest difference. A good therapist will encourage a parent/carer by saying that the more practice that can be embedded in the child’s daily routine – in the places where the child spends time – is the best form of therapy. On average, for every hour of time spent weekly with a therapist, the child is with other significant people such as family and friends for approximately 80 waking hours plus 20 hours in child care with educators. Considering this, it’s easy to see who might have the most influence on a child’s development.

Parents/carers believing in their own ability to understand, tune into and respond to their child’s likes, dislikes, strengths and challenges is the key to great outcomes for young children with additional needs.

One of the challenges faced once a parent/carer has been advised to seek therapy for their child’s developmental delay or disability, is choosing the right therapy to meet their child’s needs. Parents/ carers rely on expert advice and place their trust in experienced professionals. How do they know which one is best for their child? Currently, there is no accreditation system to make the choice easier.

This is a piece of policy work in progress but in the meantime, there are some simple best practice principles that can assist with selecting the best supports.

!$

Early Childhood Intervention Australia, the peak body for ECI in Australia, has developed a set of guidelines for ECI practitioners on best practice – The National Guidelines for Best Practice in Early Childhood Intervention (2016).

WHEN CHOOSING A THERAPIST, OR AN ORGANISATION WHO IS OFFERING THERAPY, PARENTS/CARERS SHOULD CONSIDER THE EIGHT BEST PRACTICES TO ASSIST THEIR DECISION MAKING: 1. FAMILY – THE CENTRE OF ALL SERVICES AND SUPPORTS

2. ALL FAMILIES ARE DIFFERENT AND UNIQUE ECI PRACTITIONERS PROVIDE SERVICES AND SUPPORTS IN WAYS THAT ARE SENSITIVE AND RESPECTFUL OF YOUR FAMILY’S CULTURAL, LANGUAGE AND SOCIAL BACKGROUNDS AND YOUR FAMILY’S VALUES AND BELIEFS.

Your family works together with ECI practitioners as active and equal partners where planning and interventions for your child are based on your family life and your priorities and choices.

3. YOUR CHILD AT HOME AND IN THE COMMUNITY

Your child is fully included and participates meaningfully in home and community life, with additional supports as needed, creating a real sense of belonging.

4.

YOUR CHILD PRACTISES AND LEARNS NEW SKILLS EVERYDAY Your child engages, learns and practises skills through participation in the activities and daily routines of their everyday life.

7. WHAT YOU WANT FOR YOUR CHILD AND FAMILY ECI practitioners will focus on what you want for your child and family and will work closely with you to achieve the best outcomes for your child.

5. Team around your child Your family works together with practitioners as a team around your child communicating and sharing information, knowledge and skills, with one main person, called a key worker, working with your family.

6. BUILDING EVERYONE’S KNOWLEDGE AND SKILLS Building the knowledge, skills and confidence of your family and the important people in your child’s life will have the biggest impact on your child’s learning and development.

8. Q UALITY SERVICES AND SUPPORTS Ensures that practitioners working with your child have appropriate qualifications and experience and base their intervention on sound clinical evidence and research. (reference: “Choosing an ECI service provider: What to look for”; ECIA 2017)

IF I COULD JUST SAY ONE THING, THE POSSIBILITIES FOR EVERY CHILD ARE ENDLESS WHEN THE MOST IMPORTANT PEOPLE IN THEIR LIVES ARE SUPPORTED TO BRING OUT THE BEST IN THEM AND LET THEM SHINE. Early Childhood Intervention Australia (ECIA) is the singular national peak and advocacy body that works with practitioners, government, families and other stakeholders to ensure the very best outcomes for children aged 0-6 years with developmental delay or disability and their families.

Find out more at www.ecia.org.au ISSUE 19

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BY SOPHIA GOODWIN AND CHRISTINE LEE

Demystifying occupational therapy for kids and at home tips!

As occupational therapists, we’re often asked: • “Do occupational therapists help people find jobs?”

• “Are occupational therapists similar to physiotherapists?”

• “Don’t occupational therapists only work with the elderly” Over the years, we’ve come across many misconceptions about occupational therapy, so, we hear you ask…

What is occupational therapy?

The word ‘occupation’ in occupational therapy refers to daily activity, including all activities that individuals need to do, want to do and have to do.

Therefore, an occupational therapist helps people to be successful across all their daily activities.

Occupational therapists work across the whole lifespan, for an adult this may involve everyday activities such as working, driving, socialising, shopping and for a child this may involve drawing, playing, eating, making friends, dressing, moving etc.

OCCUPATIONAL THERAPISTS CAN HELP SUPPORT CHILDREN TO REACH THEIR DEVELOPMENTAL MILESTONES

BY WORKING ON: • Motor skills – these can be broken into two areas; fine motor skills such as cutting, drawing, doing up zips and buttons, and gross motor skills such as running, jumping, balancing and hopping.

• Problems with dressing, toileting, brushing teeth or other daily tasks • Struggles with attention, concentration or following directions • Difficulty with sitting at a desk or table, fidgeting or excessive movement • Clumsiness, struggles to participate in playground games or sports • Withdrawn from social situations and making friends • Reduced confidence, anxiety or avoidance of activities

WHAT IS INVOLVED IN AN OCCUPATIONAL THERAPY SESSION? An occupational therapy session should involve these four important components:

• Self-care abilities – include toileting, dressing, eating and looking after their belongings.

1. Background and goal setting

• Social and play skills – include the ability to share, take turns, wait, problem solve and negotiate.

3. Take-home strategies for parents

• Sensory – regulating information such as sound, movement, vision, taste, touch, smell and pressure.

It’s best practice when occupational therapists are working with children that they use a play-based approach. That is, using age-appropriate toys and games, aligned with your child’s interests, to build your child’s skills. This strengths-based approach keeps your child motivated while they develop and practice new skills and are more likely to retain what they have learnt. It’s equally important to equip parents, carers and educators with tips and strategies so the child can continue to practice and work towards their goals, no matter the environment.

• Equipment – occupational therapist may provide assessment and recommendations for wheelchairs, rails and ramps.

WOULD MY CHILD BENEFIT FROM OCCUPATIONAL THERAPY? There are a number of signs which could indicate your child may benefit from occupational therapy.

These may include: • Messy or poorly constructed handwriting • Difficulties colouring, cutting, holding cutlery • Becoming easily overwhelmed in situations • Behavioural difficulties or concerns in environments • Struggles copying from a blackboard or completing puzzles

!$

2. Skill development for your child 4. Fun!

Therapy can occur in a clinic or in a child’s natural environment such as at home, school or a child care centre. There are many factors to consider when choosing a therapy location such as your child’s behaviour, comfort level, disruption to routine or even travel costs. We encourage you to pick a location that will work best for you and your child. If in doubt, talk to your occupational therapist.

THREE OF OUR FAVOURITE TIPS FOR PARENTS ARE: • Play with your child. This may seem obvious, but it’s amazing how often parents say they don’t know how to play or interact with their child. You are your child’s most important teacher in their development – talk to them, read stories, draw pictures, play in the sandpit, have water fights, play dress ups. Never underestimate the power of play.

• Be patient. Kids learn how to be independent by being allowed to give things a go themselves. For example, dinner time with children often is messier, takes more time and overall less food is eaten if they’re in control. However, dinner time is a great opportunity for sensory food play, cooperation, communication and fine motor development – so be patient, and embrace the mess!

• Ask for help. You are your child’s most important teacher, but this doesn’t mean you can’t ask for help when you need it. If you are unsure or have concerns about your child’s development then asking for professional advice is always recommended. Contacting your family General Practitioner (GP) or Paediatrician is a good place to start. Referrals aren’t necessary to see an occupational therapist, however, this may help offset the cost of therapy.

This article was developed by Sophia Goodwin (Practice Lead and Occupational Therapist) and Christine Lee (Occupational Therapist) at Growing Early Minds.

Growing Early Minds provides early intervention and disability support to children 0-16 years. For more information visit growingearlyminds.org.au ISSUE 19

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THERAPY

|

SETTING GOALS - AUTISM

In association with

SETTING GOALS FOR A CHILD WITH AUTISM INTENSIVE AND EARLY THERAPY CAN PROVIDE THE BEST OUTCOMES FOR YOUR CHILD, BUT IT’S IMPORTANT TO MAKE SURE THAT YOU ARE ON THE RIGHT TRACK AS EVERY CHILD WILL HAVE DIFFERENT NEEDS AND RESPOND IN DIFFERENT WAYS TO THERAPIES. YOU AND YOUR FAMILY SHOULD WORK WITH YOUR CHILD’S THERAPIST TO SET CLEAR GOALS SO THAT YOU CAN ADDRESS YOUR CHILD’S NEEDS AND STAY FOCUSED ON THE THINGS YOU WANT THEM TO ACHIEVE. Because autism is a condition which affects a child’s social and behavioural development and can touch on so many aspects of your child’s daily activities, families can sometimes feel overwhelmed when thinking about how they will address education and socialisation for their child.

Setting achievable ‘SMART’ goals for your child’s progress is a very useful strategy which maintains focus on an outcome, setting up a target for your family, your therapist and your child to work towards together. It can also be very satisfying as you are able to see meaningful progress being made in your child’s development.

SMART GOALS The most effective goals follow the SMART acronym: they are Specific, Measurable, Achievable, Relevant and Timely.

For example, one common goal that a family may identify is, for their child to learn how to eat independently.

Then, you break down your target into the SMART goal components. The SMART goal might be that, after two weeks, for one meal each day, your child is able to complete the meal without assistance.

This goal is SPECIFIC – because it talks about what you expect. It’s MEASURABLE – because you are nominating one meal per day; ACHIEVEABLE – by choosing just one meal a day you are putting less pressure on and for example, you may choose breakfast because it’s a smaller meal and perhaps your child is more enthusiastic about breakfast.

The goal is RELEVANT, because it’s a step towards independent eating, and it’s TIMELY because you know this will happen in two weeks.

HOW CAN THERAPISTS HELP IN THE GOAL SETTING PROCESS? Your therapist can help you look at the stage that your child is at now, identify where you would like them to be, then help you break down the steps to get there.

Therapists can also help you to identify realistic goals and timeframes so that you’re not setting yourselves up to fail.

For example – a goal that your child will speak to you each day, may not be realistic in a nonverbal child who is not showing an interest in communication.

Some children may not talk until they are well into their primary years, for example. A therapist can work with you to determine how you can meet your needs with a realistic goal – for example, the therapist may find other ways that you can communicate with your child apart from verbal language, such as through pictures or signing.

STAGED GOAL SETTING Goal setting can be staged, and can look at the long term, then break the ultimate aims down into smaller and more achievable steps.

By working with a therapist who is an expert in child development and the development of children with autism, you will be able to set realistic goals and then work with your provider to find out what you need so that you can help your child reach the next stage.

SMART goals allow your child to experience success and are motivating for children to continue to apply themselves to learning. Once a child and a family start to get momentum and experience success, they are motivated to keep going.

Children need to have a further formal autism assessment within 18 months of the time that they start school, typically at age four and a half.

This reassessment can be a useful exercise, which shows what developmental milestones your child has achieved and can also serve as a ‘marker’ so that you can assess their continuing progress and find out how they have gone against the goals that you have set.

Autism and developmental delay specialists

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ISSUE 19

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AUTUMN 2019

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N O S WHAT' CALENDAR OF

SOURCE KIDS

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WHAT'S ON

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March 23 Possum Magic Show, audio described performance Sydney Opera House www.sydneyoperahouse.com

1-31 Disabled Surfers of Australia Beach Days disabledsurfers.org 15 National Day of Action against Bullying and Violence bullyingnoway.gov.au/NationalDay

25 International Guide Dogs Day www.guidedogs.com.au

21 World Down Syndrome Day www.downsyndrome.org.au

27 Possum Magic Show, Auslan-interpreted performance Sydney Opera House www.sydneyoperahouse.com

26 Purple Day, International Day for Epilepsy Awareness www.epilepsy.org.au 31 Sensory Movie Screenings – The Lego Movie 2 www.eventcinemas.com.au/EventsFestivals/ SensoryFriendlyScreenings

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6 Wishbone Day for Osteogenesis Imperfecta www.wishboneday.com

1 National Smile Day www.humourfoundation.org.au

9-10 ATSA Independent Living Expo Sydney Olympic Park www.atsaindependentlivingexpo.com.au

2-30 Go Blue for Autism www.goblueforautism.com.au 2 World Autism Awareness Day www.autismawareness.com.au 6 Billionaire Boy, Auslan-interpreted performance Arts Centre Melbourne www.artscentremelbourne.com.au/whatson/2019/kids-and-families/billionaire-boy

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29-30 Source Kids Disability Expo, Melbourne Convention & Exhibition Centre www.sourcekids.com.au/expo-melbourne

18 Possum Magic Show, relaxed performance Sydney Opera House www.sydneyoperahouse.com 19 Family Picnic and Easter Egg Hunt Werribee Park www.cadbury.com.au/About-Cadbury/ Cadbury-Easter-Egg-Hunt.aspx

7-June 11 Sound Beginnings sensory program (Tuesdays) Arts Centre Melbourne www.artscentremelbourne.com.au/whatson/2019/the-channel/sound-beginnings 10 North Lakes (QLD) Library Backstage Pass for special needs families www.facebook.com/pg/Sensorysouls/events 14 Alice Through the Opera Glass relaxed performance Melbourne Arts Centre www.artscentremelbourne.com.au/whatson/2019/seasons/vo/alice-through-theopera-glass 15-16 ATSA Independent Living Expo Royal ICC, Brisbane www.atsaindependentlivingexpo.com.au 16 Global Accessibility Awareness Day globalaccessibilityawarenessday.org/ 17 There’s a Sea in my Bedroom sing and play performance Sydney Opera House www.sydneyoperahouse.com 19-25 National Palliative Care Week palliativecare.org.au 26- June 1 Food Allergy Awareness Week www.foodallergyaware.com.au

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PRODUCT SPREAD

K S L A T ' T E "L " . . .

Y R O SENSE

? e d lu c in m o o r y r o ld your dream sens

what wou

Colour Changing Pebble

Hape Rock & Rhythm Band

What a great inclusion to a sensory space.

Encourage movement and exploration with this hollow yet strong pebble.

Rock to the beat with this perfectly scaled, portable percussion set.

RRP $69.95 www.woodenwonderland.com.au

RRP $175.00 www.linksensory.com

Senseez Touchable Cushion Great for kids with loads of energy, these lightweight, portable,vibrating cushions offer a gentle sensation when squeezed or sat on. Great to calm those who need sensory feedback or help train the hypersensitive to tolerate more sensations.

SURFLOOR

RRP $69.95 www.sensorycalm.com.au

A set of six durable liquid floor tiles will give your kids a true sensory experience as they stand, press or jump on the tiles.

RRP $299.95 www.teaching.com.au

SOFTPLAY FIBRE OPTIC TUNNEL

WOW! Imagine climbing into this sensory haven. Experience a colourful twinkling world of light. We wouldn’t mind lying on the tunnel floor now, how about you?

RRP $ Price upon request www.wilkinsinternational.com.au

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Mystery Sensory Balls We wouldn’t mind playing with these! These six reflective mirror balls may all look the same but they are not. Some will wobble, some will turn, some feel funny when twisted or shaken and others may make shaker or rattle sounds. What a treat!

RRP $104.95 www.teaching.com.au www.sourcekids.com.au

Kids Kloud Made completely from shredded Dream foam, once you sit, you won’t want to get back up!

Imagine floating on a cloud….

RRP from $439.00 www.kloudsac.com.au

AT HOME SENSORY STARTER PACK

A great all-round kit for sensory input into your child’s room. Affordable, and requires minimal space. Contents may vary but sets typically include: soothing visual effect items, aroma and sound diffuser and tactile items.

RRP $235.00 www.linksensory.com

COLOUR CHANGING TOUCH BOARD Leave an impression with this heat sensitive board.

The ‘Quoll’

RRP $104.95 www.teaching.com.au

Creep, crawl, slither and slide through this firm attachment.

This tool is used to integrate proprioception, sensorimotor needs and also support modulation needs.

Musical Curtain

RRP $237.00 www.myburrow.com.au

Tune out with this mesmerising product. Watch the beads light up in soothing colours or run your hands through them, all while listening to soothing melodies.

RRP $479.00 (special order) www.sensoryconnect.com.au

WEIGHTED LAP BAG

We all know weighted products provide deep pressure sensory input. If you haven’t tried one out yet, start small, with a lap bag. You never know it could be the perfect new companion!

RRP from $42.97 www.skillbuilders.com.au

Hammock Chair What a great indoor resource. The hammock is made from 100% cotton, super strong and includes a steel stand.

Ideal for movement, tight hugging pressure and swinging of course!

RRP $225.00 www.mydiffability.com.au

!$

Reach & Match Inclusive Education Kit This sensory kit includes an inclusive learning program that empowers children with differing abilities by developing essential cognitive, motor, social and communication skills. Play and investigate through sensory integration with over 30 activities.

RRP $1250 plus GST www.reachandmatch.com

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A place where different abilities are celebrated!

y my diffabilit australia We are an online supplier of therapy equipment, toys and resources for people with different abilities.

Our products are carefully selected to assist in the development of skills in a wide range of areas, and are also motivating and engaging for endless fun!

Our product categories include: Sensory, Oral Motor, Fidgets, Fine Motor, Gross Motor, Social Skills, Play, Books, Gifts, Communication / Educational, Timers / Schedules... and more!

PO Box 3121, Caroline Springs, VIC 3023

(03) 8456 6613 e. advice@mydiffability.com.au

Body Socks

www.mydiffability.com.au

NINJA BABIES DESIGNER CHEWABLE JEWELLERY NINJA BABIES SENSORY RESOURCES & EDUCATIONAL TOOLS DESIGNER CHEWABLE JEWELLERY

SENSORY RESOURCES & EDUCATIONAL TOOLS

R

Do you need top quality affordable cotton waterproof bed linen?

USE ‘SOURCEKIDS’ CODE FOR 10% DISCOUNT

HEALTHY ALTERNATIVES · AGE & SOCIALLY APPROPRIATE IMPROVE SELF-REGULATION, CONCENTRATION & PARTICIPATION HEALTHY ALTERNATIVES · AGE & SOCIALLY UNISEX STYLISH PRODUCT TOAPPROPRIATE ASSIST WITH

IMPROVE SELF-REGULATION, CONCENTRATION & PARTICIPATION

AUTISM SUCKING BITING ADHD MOUTHING STRESS & ANXIETY UNISEX STYLISH PRODUCTSENSORY TO ASSIST WITH FIDGETING CHEWING PROCESSING AUTISM SUCKING BITING ADHD MOUTHING STRESS & ANXIETY FIDGETING CHEWING SENSORY PROCESSING

ORDER ONLINE:

NinjaBabies.com.au ORDER ONLINE:

BASED ON THE SUNSHINE COAST, QLD, AUSTRALIA

!$'

Brolly Sheets is an NDIS registered provider of waterproof bedding, mattress, chair and clothing protectors.

www.BrollySheetsGeneralStore.com Glenn@brollysheets.com !

Phone 1800 809 847

NinjaBabies.com.au

ISSUE 19 |COAST, AUTUMNQLD, 2019 AUSTRALIA 44 BASED ON THE SUNSHINE

www.sourcekids.com.au

Leap in! Plan Management helps you get ready for your NDIS meeting and is the perfect partner to manage your plan.

Unlock your NDIS. I’ve got my NDIS plan and I’m looking for a plan manager.

I’m getting ready for my first NDIS plan.

Leap in! gives you: • Fast turnaround – join today and claim tomorrow!

• Real time tracking of your NDIS budgets • Easy claiming and payment of your invoices • Assistance to find providers that are right for you.

Get started with: • A free NDIS pre-planning consultation – all you need to know in one call • Australia’s leading NDIS planning app • Info on all the options for managing your plan • Experienced and friendly crew ready to help.

It’s time to make it happen.

Call 1300 05 78 78 or download the free app today.

SOURCE KIDS

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HOW TO MANAGE YOUR NDIS PLAN

SELF, PLAN OR AGENCY? HOW TO MANAGE YOUR NDIS PLAN

During your NDIS planning meeting you will be asked how you wish to manage your plan once it is signed off. There are three different ways that your plan can be managed and it’s important to know the difference between the three so that you can choose the option that best suits you and your family’s needs and capabilities. The three options are selfmanaged, plan-managed or agency (NDIA) managed. You can also use a combination of the three. For example, you could choose to have your Improved Daily Living supports agency managed, which would allow therapy providers to claim directly to the NDIA for their services while self-managing the Core supports or consumables budget could give you flexibility of choice and control over how much you spend for items.

LOOKING AT THE THREE OPTIONS FROM A PURELY FINANCIAL PERSPECTIVE: With a self-managed plan, you pay your support providers directly and apply for reimbursement from the NDIS. You are solely responsible for all the administration associated with your plan and liaison with providers etc.

If you appoint a plan manager they will look after the financial and administrative elements of the plan for you. The NDIA will pay your plan manager who will then pay your providers for you.

If you choose NDIA management they will pay your providers directly.

However, besides the financial element of how providers are paid, there are other things you need to consider when choosing which route to take. Here’s an overview of the key differences between the three options and some of the pros and cons of each...

SELF-MANAGED According to the NDIS the benefits of self-management are that you have control, independence and flexibility in arranging and paying for your supports.

You can choose what supports you purchase in line with what’s included in your plan and who provides these supports. The provider does not have to be NDIA registered so you will have a much wider choice of who you can work with and you’ll also have the capacity to employ or contract staff directly or have someone employ staff on your behalf.

As you’re in control of your budget you can negotiate costs of your supports to get best value for money – possibly stretching your funds further. You are 46

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THERE ARE PROS AND CONS TO ALL OF THE OPTIONS

also not bound by the price guide limits, so if you do wish to pay more than the agency stated amount for a piece of equipment you are free to do so.

providers for the supports you purchase, tracking your spending, taking care of financial reporting and they can also help you choose your providers.

Along with the freedom and flexibility afforded by self-management you also have a number of responsibilities that you do not have with the other two options. The NDIS website states that these include:

NDIA (AGENCY) MANAGED

• Purchasing supports that link to the goals in your NDIS plan.

• Making clear agreements with your providers about the supports you will receive including how they will be provided and paid for.

• Keeping invoices and receipts to show you have paid for your supports using your NDIS funding.

• Meeting your obligations as an employer if you choose to employ staff directly.

• Showing how you’ve used your self-managed funding towards reaching your goals at your plan review.

• Advising the NDIA of any significant changes in your circumstances that may result in you being unable to meet your responsibilities as a self-manager.

• Participating in any payment auditing where you will need to provide invoices, receipts or other evidence to show you have spent your funds in-line with your NDIS plan (you should keep financial records for 5 years).

PLAN MANAGEMENT PROVIDER If you choose the plan management option, a plan manager will be funded in your plan and they must be a registered NDIS provider.

With a plan manager you will have the same flexibility of service provider choice for your plan supports as self-management (i.e. they do not have to be NDIS registered) with the only key difference being that plan-managed supports cannot be paid at a rate higher than the NDIS price guide. They can, of course, negotiate on your behalf to pay a lower price to maximise your funds.

The key benefits of using a plan manager is that they will take care of all the finance and administration part of your plan for you such as paying your

!$

When your plan is managed by the NDIA (sometimes referred to as Agency-managed): • You cannot use unregistered providers but you can choose your providers from the list of those registered with the NDIS. • Your providers claim payment electronically from your funding.

• You can look on the myplace portal to see what claims providers are making against your NDIS funding and keep track of your budget.

• The NDIA will manage your book-keeping and records of your spend.

• Service bookings must be set up through the NDIS portal.

• All prices paid will be at the price guide rate so you can’t negotiate with providers and stretch your funds further.

AS YOU CAN SEE THERE ARE PROS AND CONS TO ALL OF THE OPTIONS WITH SELF-MANAGING GIVING YOU THE MOST FLEXIBILITY AND CONTROL. YOUR CHOICE MAY COME DOWN TO HOW COMFORTABLE YOU ARE WITH THE FINANCIAL AND ADMINISTRATIVE ASPECTS OF SELFMANAGING OR PERHAPS YOU KNOW IN ADVANCE THAT YOUR CHILD WILL ONLY USE REGISTERED PROVIDERS SO YOU’RE HAPPY FOR THE NDIA TO MANAGE YOUR FUNDS. WHATEVER OPTION YOU END UP CHOOSING, YOU HAVE THE FLEXIBILITY OF REVIEWING YOUR CHOICES WHEN YOUR PLAN IS RENEWED OR REVIEWED. ISSUE 19

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STAND UP STRIDE FORWARD THRIVE ON! ,

,

Australia’s largest collection of medical-grade orthopaedic footwear, wearable postural support equipment for children and adults including: Sensory Dynamic Orthosis (SDO) garments, hand splints, arm/leg wraps, head/neck support collars. Paediatric Physiotherapy lead services and equipment provider. NDIS registered.

www.wellandable.com.au

Let us help you maximise your NDIS plan today!

When you choose Integra, you’ll get an independent service provider who will give you expert, unbiased support that works to achieve your goals. We help you, your family and carers to have choice and control over your NDIS plan through our Plan Management and Support Coordination services.

Get in touch with our friendly team

1800 696 347

myintegra.com.au

Integra is a trading name of Integrated Care Pty Ltd | ABN 62 149 233 634

Spend more time doing the things you love.

NDIS PLAN MANAGEMENT

Get the most out of your NDIS funds without the admin! Friendly & experienced team, daily invoice processing, SMS alerts, Mobile app.

1800 549 670

hello@plantracker.com.au 48

WWW.PLANTRACKER.COM.AU |

ISSUE 19

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www.sourcekids.com.au

Proven Performance

The new standard in therapy for brain-injured children Combining parent education and intensive therapy to unlock children’s potential.

CME | TheraSuit | Powerplate | Parent Education

Locations: Adelaide Melbourne • Auckland Sydney • Brisbane Head office: 490 Brighton Road, Brighton SA

To book your free assessment email admin@timmermansmethod.com.au or phone 0411 696 839

On your side, by your side.

At Plan Partners, we help you bring your NDIS plan to life.

You can rely on us to be by your side at every stage of your NDIS journey. Putting you first is a key commitment in our Customer Charter.

Plan Partners is Australia’s leading expert in NDIS Plan Management and Support Coordination.

1300 333 700 | planpartners.com.au

Bed Pads & Mattress Protectors

Washable Underwear, Disposable Pads & Pants

Bedwetting Alarms

Skin Care

www.aleva.com.au Call us 1300 253 821 (1300 ALEVA1) REGISTERED NDIS PROVIDER

Creating a lifetime of opportunities for children with autism At AEIOU Foundation, children with autism aged 2 to 6 receive specialist therapy and care to develop essential life skills that last a lifetime.

Contact us for advice on NDIS access, or for details about upcoming open days and workshops.

Find a centre near you, by visiting www.aeiou.org.au or calling 1300 273 435.

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BATHROOM AIDS

Bathroom Aids PRODUCT REVIEW

ADVANCE BATH CHAIR

AUGSBURG

AUGSBURG 24 - SELF PROPELLED

Rebotec

Sunrise Medical

BERLIN Rebotec

Rebotec Age range: 1 to 18 yrs Weight range: 72kg Height range: 75-165cm Overall width: 430mm Overall height: Varied Recline/Tilt: Yes Height adjust: Yes

TYPE: BC SUITABLE FOR T,C,Y,A

Key features: Abduction belt, Head Support Four sizes available, makes bath time safe and fun while still meeting an individual’s postural needs. Simple and easy to use adjustments which can be set up in a variety of positions in seconds.

Age range: 5 to 16 yrs Weight range: 80kg Height range: 180cm Overall width: 530mm Overall height: 870mm Recline/Tilt: Yes Height adjust: No

TYPE: SC SUITABLE FOR C&Y

Key features: Height adjustable headrest, Seat width and depth adjustment kit, Armrest cushions, Safety belt and belt cushion, Commode IV pole Shower-commode chair for children.

Age range: 5 to 16 yrs Weight range: 80kg Height range: 180cm Overall width: 660mm Overall height: 970mm Recline/Tilt: No Height adjust: No

TYPE: SC SUITABLE FOR C&Y

Key features: Armrest cushions, Safety belt and belt cushion Self-propelled, shower-commode wheelchair for kids.

BORIS

FLAMINGO

ELEXO XXL

Mobility Plus

R82, Special Needs Solutions

Alphacare

Age range: 10+yrs Weight range: 130kg Height range: 240cm Overall width: 560mm Overall height: 870mm Recline/Tilt: Yes Height adjust: No

TYPE: SC & TS SUITABLE FOR Y&A

Key features: Safety belt and belt cushion, Commode IV pole, Splash guard, Commode seat without hygiene opening, Armrests, Bucket pail Shower-commode chair with PU soft seat and front hygiene opening.

ELEXO SHOWER COMMODE Alphacare

Age range: 3 to 99 yrs Weight range: 150kg Height range: 100-170cm Overall width: 560-740mm TYPE: SC & TS Overall height: 650-700mm SUITABLE FOR Recline/Tilt: Yes C,Y&A Height adjust: No

Age range: 1 to 14 yrs Weight range: 70kg Height range: 152cm Overall width: 502-570mm TYPE: BC,SC,TC Overall height: 640-760mm SUITABLE FOR Recline/Tilt: Yes T,C&Y Height adjust: Yes

Key features: Headrest, Padded tray, Toilet bucket, Abduction wedge, Foot plate, Padded calf plate, Chest harness, Pelvic harness, Padded insert

Key features: Head support, Lateral support, harness, 4-point lap belt, Armrests, Swing away tray, Calf support, Foot support, Commode pan, Potty ring, Splash guard, Suction cups

Available in 5 sizes, one of the most robust, supportive and comfortable shower and toilet chairs on the market.

FLEXO ELECTRIC AND HYDRAULIC SHOWER COMMODE

Age range: 10 to 99+ yrs Weight range: 220kg Height range: NA TYPE: BC,SC,TS Overall width: 700mm SUITABLE FOR Recline/Tilt: Yes Y&A Height adjust: Yes

Age range: 10 to 99+ yrs Weight range: 180kg Height range: NA TYPE: BC,SC,TS Overall width: 680mm SUITABLE FOR Recline/Tilt: Yes Y&A Height adjust: Yes

An attendant propelled, electric, height adjustable, tilt in space bariatric shower commode. The seat can reach a maximum tilting angle of 17 degrees.

An attendant propelled, electric, height adjustable, tilt in space shower commode.

The seat can reach a maximum tilting angle of 17 degrees.

GENF

HERON

Rebotec

R82, Special Needs Solutions

JUVO SHOWER COMMODE

Can be used in the bath, over the toilet or in the shower.

Astris PME

Alphacare Age range: 10 to 99+ yrs Weight range: 150kg Height range: NA TYPE: BC,SC,TS Overall width: 820mm SUITABLE FOR Recline/Tilt: Yes Y&A Height adjust: Yes This mobile shower commode features hydraulic height adjustment, upholstered seat with hygiene opening, front locking armrests, carrier for commode bowl or bedpan, flip up armrests to enable side transfers, adjustable leg rests, and a 15-degree incline.

!$

Age range: 12+ yrs Weight range: 130kg Height range: 240cm Overall width: 710mm Overall height: 950mm Recline/Tilt: No Height adjust: No

TYPE: SC SUITABLE FOR Y&A

Key features: Safety belt and belt cushion, Splash guard, Armrests, Bucket pail 24″ wheel, self-propelled shower commode wheelchair.

Age range: 12-adult yrs Weight range: 100kg Height range: 182cm Overall width: 670mm Overall height: 710mm Recline/Tilt: Yes Height adjust: Yes

TYPE: SC, TS SUITABLE FOR Y&A

Key features: Head support, lateral support, Shoulder support, Harness, 4-point lap belt, Swing away armrests, Hip support, Tray, Calf support, Foot support, Commode pan, Potty ring, Splash guard, Padded upholstery Tilt in space, recline and height adjustment.

Age range: 10 to 99 yrs Weight range: 180kg Height range: NA Overall width: 440mm Recline/Tilt: No Height adjust: No

TYPE: SC,TS SUITABLE FOR Y&A

There are two innovative variations of the Juvo shower commode – self-propelled with swing away footrest or self-propelled with sliding footplate. Both feature seamless PU padded seats and pressure care seats with open or closed fronts and PVC slatted backrest. Can be used for toileting.

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LOPITAL TANGO SHOWER COMMODE

LYON

MANATEE

MARINA ELECTRIC AND HYDRAULIC SHOWER TROLLEY

Rebotec

R82

Alphacare

Age range: 12+ yrs Weight range: 130kg Height range: 240cm Overall width: 490mm Overall height: 510mm Recline/Tilt: No Height adjust: Yes

Age range: 12 to adult yrs Weight range: 75kg Height range: 150cm Overall width: 420-490mm Overall height: 1030TYPE: BC,SC 1510mm SUITABLE FOR Recline/Tilt: Yes T,C,Y Height adjust: Yes

Age range: 10 to 99 yrs Weight range: 180kg Height range: NA Overall width: 820mm Overall height: 2090mm Recline/Tilt: Yes Height adjust: Yes

Alphacare

Age range: 10 to 99 yrs Weight range: 180kg Height range: NA Overall width: 480mm Recline/Tilt: Yes Height adjust: Yes

TYPE: BC,SC,TS SUITABLE FOR Y&A

TYPE: SC,TS SUITABLE FOR Y&A

Lopital Tango Shower commode chair is a shower assist device that enables users to bath in a responsible and safe manner with the help of a carer. Whilst keeping the user safe, the Tango also reduces the risk of injury to the caregiver.

Key features: Travel bag, Bucket pail

NIZZA

PHOENIX MULTI

Rebotec

Modular commode chair with backrest and armrests.

Key features: Head support, Lateral support, Lap belt, Foot straps, Pommel, Shower frame, Wall mounting The Manatee is a lightweight, portable bath and shower chair with recline and tilt in space. It has height adjustable legs and also a shower stand to provide optimum working heights.

OCTOPUS BATH CHAIR

Rebotec

TYPE: BC,SC SUITABLE FOR Y&A

Key features: Travel bag Modular shower chair with backrest, armrests and front hygiene opening.

OTTER BATHING SYSTEM

Age range: 10+ yrs Weight range: 150kg Height range: 240cm Overall width: 530mm Overall height: 510mm Recline/Tilt: Yes Height adjust: Yes

TYPE: SC SUITABLE FOR Y&A

Key features: Safety belt and belt cushion, Commode IV pole, Splash guard, Large cushion headrest (cushion headrest included), Armrests, Bucket pail Electric tilt and lift power commode shower chair.

PENGUIN

R82, Special Needs Solutions

Key features: Abduction straps, Head laterals Features angle adjustable chair legs with articulating back and leg support, range of height/angle positions to make bath time easier and more fun. One hand is needed to release the leg and seat locks located on both sides of the chair. Four sizes available.

Key features: Lateral supports, Shower stand, Tub stand Angle adjustable seat and backrest to accommodate each positioning needs.

The legs are slip-resistant for safety and can raise the chair an additional 7″. Height and width adjustable lateral supports for positioning the head or trunk. Available in three sizes.

Key features: Moveable pommel, Suction cups

TYPE: BC SUITABLE FOR T

The Penguin is a small lightweight, portable bath seat that can be attached to the bottom of a bath tub using suction cups.

Age range: 10+ yrs Weight range: 150kg Height range: 240cm Overall width: 650mm Overall height: 1110mm Recline/Tilt: Yes Height adjust: No

AUTUMN 2019

TYPE: BC, SC SUITABLE FOR Y&A

Key features: Safety belt and belt cushion, Commode IV pole, Splash guard, Large cushion headrest (cushion headrest included), Armrests Tilt in place comfort shower commode chair.

TYPE: BC= Bath Chair, SC=Shower Chair, TS=Toilet System, O=Other

|

TYPE: BC SUITABLE FOR T

Key features: Height adjustable legs The Orca is a height adjustable bath tub that provides an optimum height for the carer.

Alphacare

Age range: 0 to 2 yrs Weight range: 20kg Height range: 80cm Overall width: 330mm Overall height: 800mm Recline/Tilt: No Height adjust: No

ISSUE 19

Age range: 0-3 yrs Weight range: 50kg Height range: 80cm Overall width: 550mm Overall height: 1110mm Recline/Tilt: No Height adjust: Yes

REFLEX SHOWER COMMODE

Rebotec

Weight range: 150kg Height range: 91.5-172.8cm Overall width: 440mm Overall height: 927 TYPE: SC -1270mm SUITABLE FOR Recline/Tilt: No C&Y Height adjust: No

52

TYPE: BC SUITABLE FOR C&Y

PHOENIX TILT

R82, Special Needs Solutions

Astris PME

Age range: 5 to 18 yrs Weight range: 150kg Height range: 80-165cm Overall width: 400mm Overall height: 975 -1488mm Recline/Tilt: No Height adjust: Yes

The Marina Shower Trolley provides those with limited mobility the opportunity to safely bath with the help of a carer. Whilst offering safety to the user, the Marina Shower Trolley also reduces the risk of injury to the caregiver.

ORCA

Astris PME

Age range: 12+ yrs Weight range: 130kg Height range: 240cm Overall width: 530mm Overall height: 510mm Recline/Tilt: No Height adjust: Yes

TYPE: SC,TS SUITABLE FOR Y&A

Age range: 10 to 99+ yrs Weight range: 135kg Height range: NA TYPE: BC, SC Overall width: 480mm SUITABLE FOR Recline/Tilt: Yes Y&A Height adjust: Yes This power operated, height adjustable, tilting shower commode can help to provide support to a person during showering. The commode can be wheeled into the shower or over the toilet by a carer, reducing the risk of a fall and the amount of transfers.

SUITABLE FOR: T=Toddler, C=Children, Y=Youth, A=Adult

www.sourcekids.com.au

RIFTON WAVE

SEAHORSE PLUS

Medix21 Australia Pty Ltd, Special Needs Solutions

Astris Pme, Step Ahead Paediatrics

Age range: 2yrs to adult Weight range: 113kg Height range: 188cm Overall width: 530mm TYPE: BC,SC Overall height: 1550mm SUITABLE FOR Recline/Tilt: Yes Y,C,Y,A Height adjust: Yes

Age range: 5 to 18 yrs Weight range: 64-162kg Height range: NA Overall width: 532-587mm TYPE: SC Overall height: 807-860mm SUITABLE FOR Recline/Tilt: Yes C,Y Height adjust: Yes

Key features: Lightweight and easy to adjust, Can be placed in the bath, or can be placed on a shower stand, tub stand or tub transfer base

Gas assisted 40º tilt-in-space to enable showering, hair washing and toileting.

SHOWER BUDDY COMMODES Medix 21 Australia Pty Ltd, Special Needs Solutions

Mobility Plus

Comfortable and adaptable, the blue wave bathing system is designed to make bathing a more relaxed and pleasant experience for both the user and caregiver.

SMIK CARE SHOWER COMMODE

Tilt locking safety mechanism. Ease of operation and security. Size adjustable and well accessorised.

SPLASHY & SPLASHY BIG Active Rehab, Special Needs Solutions

Alphacare

Age range: 10 to 99yrs Weight range: 150kg Height range: 188cm Overall width: 550mm Recline/Tilt: Yes Height adjust: Yes

SEATARA WHEELABLE COMMODE AND SHOWER CHAIR

TYPE: SC, TS SUITABLE FOR Y,A

Age range: 1 to 14yrs Weight range: Up to 30kg for Splashy, up to 55kg for Splashy Big Height range: 61cm/72cm TYPE: BC,SC, O Overall width: 420mm SUITABLE FOR Recline/Tilt: Yes T,C,Y Height adjust: No

Can be positioned over the toilet for toileting, swing back arms assist side transfers, pan carrier and padded seat included. Patient locking arms, PVC backrest, tente castors and stainless-steel frame.

Key features: 5-point harness, Bumpers

SWAN

THE HTS

R82, Special Needs Solutions

Medix 21 Australia Pty Ltd, Special Needs Solutions

Age range: 5 to 24 yrs Weight range: 110kg Height range: 182cm Overall width: 495-655mm TYPE: SC, TS Overall height: 460-620mm SUITABLE FOR Recline/Tilt: Yes C,Y,A Height adjust: Yes The Swan is a height adjustable, multifunction and robust toileting and showering product. It can be used over the toilet or in the shower. It has a range of accessories to support the user and achieve optimum positioning and function.

Splashy sits nice and low, is very adjustable so can grow with your child. Very supportive with its bumpers and 5-point harness and you can recline it if needed. You can take it on trips to the beach and do all sorts of messy activities in it. plus, its super easy to clean.

Age range: 1 to 16 yrs Weight range: 113kg Height range: 50-188cm Recline/Tilt: Yes Height adjust: Yes

Age range: 5 to 18 yrs Weight range: 64-162kg Height range: NA Overall width: 480mm 230mm when folded Overall height: 670mm Recline/Tilt: Yes Height adjust: Yes

TYPE: SC, TS SUITABLE FOR C,Y

Key features: Carry case on wheels, Removeable pan, Upholstered seat, Padded seat with small size opening

Key features: Paediatric seat adapter, Shower buddy, Tub buddy models, Paediatric converter

The Seatara is a self-propelling, waterresistant, lightweight travel commode that can be used over a regular toilet and will fold down into a carry case on wheels in seconds.

Can be assembled in less than 20 minutes with no tools required. There are six different models ranging from paediatric to adult that cater to individual needs.

STARFISH PRO

SURFER BATHER

Starfish Pro

Step Ahead Paediatrics

Age range: 5 to 18yrs Weight range: 150kg Height range: NA Overall width: 540mm (manual), 540-590mm TYPE: SC,TC (hydraulic) SUITABLE FOR Recline/Tilt: Yes C,Y Height adjust: Yes

SUITABLE FOR T,C,Y

Key features: Headrest, Push handles, Butterfly harness, Anterior support tray, Laterals, Hip guides, Pan, Bowl adapter, Deflector, Abductor, Portability base, Carry bag No matter what the toileting situation, the type of toilet or the special need, the HTS can meet it with its unmatched versatility.

Weight range: 50kg Height range: 135cm Overall width: 370mm Overall height: 1120mm Recline/Tilt: Yes Height adjust: Yes

TYPE: BC SUITABLE FOR T,C,Y

Tilt-in-space combined shower and toilet chair has numerous, easy adjusted positioning configurations and a patented seat design that can safely accommodate the most challenging postures. Easy access for washing and to clean.

Key features: Head supports, Trunk supports, Pommel

ULTIMA BATH CHAIR

XXL TANGO SHOWER COMMODE

Step Ahead Paediatric

TYPE: SC, TS, O

Age range: 3yrs to adult Weight range: 160kg Height range: NA Overall width: 455mm TYPE: BC,SC Overall height: 1100mm SUITABLE FOR Recline/Tilt: Yes T,C,Y,A Height adjust: Yes

Age range: 1 to 99 yrs Weight range: 82kg Height range: 203cm Recline/Tilt: Yes Height adjust: Yes

A powered elevating bath lift for children, which minimises moving and handling risks to therapists, parents and carers alike. The bath lift is operated by low air pressure using the battery powered Airflo 12 power source.

Alphacare

TYPE: BC, SC SUITABLE FOR T,C,Y

Key features: Extension base, rolling extension base, Head supports, Lateral supports, Arm supports, Tray pommel For children and adults who can't stand or sit unassisted during bathing. Full head, trunk and calf support in both seated or reclined positions, with a seat that is designed to contour to the body.

Age range: 10 to 99+ yrs Weight range: NA TYPE: BC,SC,TS Height range: 820cm SUITABLE FOR Recline/Tilt: Yes Y,A Height adjust: Yes Lopital Tango XXL is a shower commode is designed for bariatric clients, can be used as a shower chair as well as a toilet chair that can be wheeled over the toilet and provides optimum comfort for the caregiver as well as the client.

LINKS TO PRODUCTS FEATURED: www.activerehab.net.au • www.alphacare.com.au • www.astris-pme.com.au • • www.specialneedssolutions.com.au www.mobilityplus.com.au • www.rebotec.com.au • www.sunrisemedical.com.au • www.stepaheadpaediatrics.com.au • www.R82.com.au

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FAMILY PROFILE

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HOLLAND FAMILY

MEET THE

Holland

BY ALLI HOLLAND

OUR FAMILY CONSISTS OF: A CHEEKY 11-YEAR-OLD BOY NAMED ASHER, MYSELF (ALLI) AND MY HUSBAND LIAM, OUR ELIJAH WHO IS NO LONGER WITH US, AND OUR NEW KITTEN, ATLAS. WHERE DO YOU LIVE: We live in a suburb of Sydney called Rouse Hill, close to Westmead Children's hospital (about 20 mins) for Asher. We are currently very limited as to where we can live due to how quickly Asher can 'crash' and go into septic shock. Thankfully though we LOVE Rouse Hill!

WHAT IS YOUR CHILD'S DIAGNOSIS AND HOW DOES IT AFFECT THEM? Asher has a life-limiting and often very lifethreatening syndrome called MECP2 duplication but he is not boxed by that diagnosis. We were told that he would never walk or talk and that it was likely that he wouldn't make his 5th birthday. Today, at age 11 he has 43 words and walks holding our hands or using a Kaye walker and he continues to achieve things we were told he never would.

As part of his MECP2 duplication syndrome Asher has global development delay, hypotonia, dystonia, a compromised immune system, chronic

FAMILY

constipation, dysphagia, he is unable to regulate his body temperature and he has autism and epilepsy. Just to keep things interesting he also has severe anaphylaxis to egg! He is a real cheeky chops and loves washing machines, dryers, cooking and watching YouTube Kids.

WHAT LED TO THE DIAGNOSIS? This is a really hard one for me and I always need to take a deep breath before answering this question, but if sharing our journey helps one person then it is more than worth it.

Asher had a beautiful big brother named Elijah (Lijey); our boys were 16 months apart as we wanted them to grow up close and be mates. Both pregnancies were miracles as due to severe stage IV endometriosis we weren't sure at all if we could have children naturally.

Elijah was born a few weeks early due to preeclampsia and had some difficulty feeding (he had no suck reflex) and ended up in the NICU. He would cry up to 17 hours a day and would only settle when I stood him in front of the venetian blinds (he LOVED stripes!).

He wasn't hitting developmental milestones and I became worried (mums, always trust your instincts). After two paediatricians who dismissed our concerns we found one that would listen to us and we were referred to a geneticist. After running all the tests available we were told that he may have some genetic abnormality but his diagnosis was most probably autism and global development delay.

We started early intervention with Elijah which connected us to so many other parents, it was like a whole new world had opened up to us. These parents got it and we weren't the odd ones out.

Then, on February 27, 2008 our world came crashing down. After one of our regular paediatrician appointments, which we returned from with no major issues or concerns, Elijah passed away in his sleep that night.

Nothing can prepare you for the pain of losing a child this way and my heart still hurts today.

Elijah’s brother, Asher, was a baby at this stage and without him I'm not sure I would have been able to get up in the mornings. That period was a blur of tears, flowers, cards and unanswered questions.

We waited agonising long months to find out what had happened to our beautiful boy but no one had any answers for us.

Then one afternoon I received a call from the genetics office Elijah had been to. A new test (CGH array) had just become available in Australia; they

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wanted to know if they could run a sample of Elijah's DNA and I told them to go ahead.

I had started to notice a few behavioural similarities to Elijah in Asher who was then 8 months old but doctors felt it was just my grief talking. I persisted and took him back to the doctor and demanded they assess him again.

The doctor we saw took a deep breath and said that he had literally just received the results of the genetic test I had agreed on and there was a result....

This was when my world came crashing down for a second time as I heard the term MECP2 duplication syndrome. The first words I could get out of my mouth were "Asher?". The doctor said that this genetic condition was X chromosome linked and that Asher had a 50 per cent chance of having the condition that took my first son’s life. He told me he had to Google the condition. handed me a print out he had found on the internet and said "well, now you know as much about the condition as I do".

I felt so alone; there were only 80 known cases of the syndrome in the world and none in Australia at that time. This was when the doctor told me that Asher, if he had the same condition, would never walk or talk and would be unlikely to make his 5th birthday. I remember leaving the room and just sitting in the toilet cubicle sobbing and throwing up.

Fast forward to the day the results came in and I could tell by the look on their faces, Asher had been diagnosed with the same condition too.

IS YOUR CHILD IN SCHOOL? HOW ARE THEY DOING/HOW ARE THEY SUPPORTED? Asher loves "gool" as he calls it and asks to go even on weekends sometimes. He is at a special school called 'The Ponds' and goes five days a week. He has begun to use 2-3-word sentences and won the school communication trophy last year. He is in a class of six made up of medically complex students with one teacher and one support worker, has a bestie called Neil and a girlfriend called Caitlin who blows him kisses and always wants to hold his hand. Asher's still playing hard to get, I'm not sure he's into the whole girl thing yet! www.sourcekids.com.au

YOU ARE NOT ALONE. THERE IS A WHOLE COMMUNITY OF SUPPORT THERE TO DO THIS JOURNEY WITH YOU WHO WILL ALSO 'JUST GET IT'. using the PODD system on Asher's iPad, we are continually expanding the vocabulary on it and Asher uses it to express his feelings/wants/ thoughts throughout the day rather than a block of time where we just sit and use it at a table. He requests ice-cream a lot!

WHAT CURRENT GOALS DOES YOUR CHILD/FAMILY HAVE? To live and value every moment and celebrate life – never take a second for granted.

Asher is currently working on time toilet training and he's doing really well, his other current goal is to help assist with getting dressed.

WHAT ADVICE WOULD YOU GIVE SOMEONE STARTING OUT ON THE SPECIAL NEEDS JOURNEY? You are not alone. There is a whole community of support there to do this journey with you who will also 'just get it'. Find a local group, Facebook group, connect with other SN parents. And nothing is impossible, don't let your child be put in a box just because of a diagnosis – it doesn't change who they are.

WHAT'S THE MOST ANNOYING/ UNHELPFUL/STRANGE ADVICE YOU'VE BEEN GIVEN? I could write a book on this one! I once had a lady say "oh well at least you still have one left" referring to Asher. And a doctor once said to me when Asher was in hospital "I heard your son went (insert raspberry noise) and there's every chance this one is going to go (insert raspberry noise) too".

Needless to say, a formal complaint was made by us and the nurses and he is never allowed to see or treat Asher!

WHAT THERAPIES DOES YOUR CHILD DO? DO YOU HAVE ANY TIPS/TRICKS FOR FITTING THERAPY INTO YOUR LIFE? Asher has physiotherapy, speech therapy and occupational therapy. It has just become our routine and rather than doing big blocks at a time we break it into bite-sized pieces and follow what the therapist suggests in our everyday lives, applying it to things that Asher loves; for example

!$

We have an idiot of the week award going at our parents’ group where we share 'war' stories and laugh them off. Some people won't get it – don't waste your time on the ones that aren't going to believe in your child and champion them.

WHAT DO YOU DO FOR ‘YOU’ TIME? With the NDIS, Asher has been given a carer so for the first time in over 10 years I have been able to go back to work part-time. My husband and I launched a project with Rouse Hill Salvation Army

called CSC (connect, support, build community) where I work directly with families with medically complex children or families of children with disabilities. I love my job, so far, we have run inclusive Christmas carols, inclusive and switch adapted cooking programs for families every week, a parent support group called 'Tribe Parents', hospital visits, home visits, meals for families at short notice, bereavement support and financial support towards medication costs.

In my spare time I love spending time with my boys; Liam and Asher are my world and I love doing life with them. We often take day trips up to the Blue Mountains together and it is so lovely being in nature and all the cute shops of course!

WHAT ARE YOUR HOPES FOR THE FUTURE? A cure for MECP2 Duplication syndrome.

WE WOULD NEVER MANAGE WITHOUT THE FOLLOWING: Products we love: • iPads and wifi!

• Molicare nappies • Lucas' pawpaw ointment • Asher's 'Hannah' safe surround bed

PEOPLE (OR BUSINESSES) WE LOVE: • Asher's grandparents – they are his favourite people • Source Kids – we LOVE everything they do and the connection, resource and inspiration they create • Wonsie – these are so essential for Asher and the quality is great, I love the ones with the snap button for Asher's quick tube feeds.

• SAMI activity monitor has literally been a life saver!

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SOURCE KIDS

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SENSORY SPACES

sensory SPACES VICTORIA

THERE ARE A G NUMBER OF PROWING AROUND AUST LACES YOU CAN TAKERALIA WHERE TO FULFIL THE YOUR CHILD NEEDS. HERE IR SENSORY A FOR YOU TO LO RE A FEW OK INTO.

WE ROCK THE SPECTRUM, PRESTON We Rock the Spectrum Kids Gyms are sensory-safe gyms, providing kids of all abilities a fun and motivating space to play and regulate on occupational therapist designed sensory equipment. www.werockthespectrumaustralia.com 03 9042 3115

LIFEHOUSE CHURCH, WESTMEADOWS Lifehouse in Melbourne’s northern suburbs is planning a dedicated space which will include soft play objects, lighting, sound and colour effects.

For updates: lifehouse.com.au/multi-sensory-room

SUNRAYSIA, MILDURA In rural Mildura there is a sensory room in their short stay accommodation, which also has three independent units, outdoor play areas and a swimming pool. www.srsinc.com.au/our-services/short-stay-accommodation/

MELBOURNE STORM @ AAMI PARK Thanks to Variety Victoria, a boardroom is converted into a sensory room for a number of Melbourne Storm games, check online for when this is available.

SOUTH AUSTRALIA AUTISM SA, ELIZABETH Open since November 2018, phase one of this new sensory space provides a fully interactive experience through the synchronised use of a projector, LED lighting, a bubble machine, an LED ball pit, pulsating cushions, fans and aromatherapy.

08 8209 0300

www.aamipark.com.au

BIG 4, RENMARK FRANKSTON TOY LIBRARY, FRANKSTON As well as a special needs lending section the library is in the process of building out a sensory room that will be available to local community groups. www.frankstontoylibrary.org.au 03 9781 3900

A brand-new sensory room has just opened at this holiday park for use by families with a child or children on the autism spectrum. Designed in close consultation with an occupational therapist, a specialist autism teacher and ASD parents, the room has a variety of equipment for use and sensory activity boxes can be requested from reception. www.big4renmark.com.au/play/sensory-room/

MELBOURNE MUSEUM – THE CHILDREN’S GALLERY, CARLTON While this is not specifically a dedicated sensory space, there are heaps of sensory related experiences on offer. The museum also has social stories available for families visiting the gallery. museumsvictoria.com.au/melbournemuseum/whats-on/childrens-gallery

MESS MATTERS, MOORABBIN Not a sensory room but at this fabulously fun, inclusive venue children are encouraged to get ‘messy’ and express themselves in an unstructured but supportive environment. messmatters.com.au 0468 331 116 56

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www.sourcekids.com.au

NEW SOUTH WALES CAREWAYS COMMUNITY SENSORY ROOM, HORSLEY The CareWays Community Sensory Room is available for the whole community to use and is available during the week, after hours and on weekends. Charges are $33 per hour or $16.50 for half-hour sessions. www.careways.org.au/sensory-room 02 4262 1918

TARKIDS SENSORY ROOM, MACARTHUR CHILDREN’S DEVELOPMENTAL CLINIC, NARELLAN Their sensory room has swings, climbing ropes, crash mats, climbing blocks, tunnels, ball pits, hammock, auditory input, imaging projectors, lights, balance beams and a trampoline. Clinicians adjust the equipment and activities in our sensory room to meet the needs of each child. www.starkidsaustralia.com.au 02 4648 0837

LIFE WITHOUT BARRIERS, TUGGERAH, NEWCASTLE The space contains an LED musical wall, 150 strand fibre optic curtain, soft items, aromatic items and more.

Call 02 4343 8834 or email christine.peruch@lwb.org.au

QUEENSLAND GIVEABILITY, PARKWOOD VILLAGE, GOLD COAST The multi-sensory room at Parkwood Village provides a safe environment for children to explore sensory stimulation.

CENTRAL COAST, KIDS DAY OUT, SENSORY WONDERLAND In 2018 visitors to the event were able to discover and explore a magical world filled with illuminated colours, soft seating, calming sounds and aromatic scents. Keep an eye on the website to see if it will return in 2019. There was also a sensory chill out room provided

by Ability Links. www.cckdo.org/index.html

www.giveability.com.au/multi-sensory-room/ 0438 701 201

MARSDEN LIBRARY, MARSDEN The Marsden Library's sensory space is a hands-on environment for families and children of all abilities to have the opportunity to explore and learn together, using their senses. Families and children 0-12 are welcome to use the free equipment whenever they are visiting Marsden Library. Groups need to call to book.

07 3412 4180

RURAL LIFESTYLE OPTIONS AUSTRALIA, EMERALD HOUSE RESPITE RETREAT, BEAUDESERT Emerald House Respite Retreat is home to a sensory room, which incorporates special lighting, music and sensory objects. Anyone who receives a service through Rural Lifestyle Options Australia is able to book the sensory room at no cost. People outside of the service can utilise this facility for a small fee. www.rloa.org.au/sensoryroom

WESTERN AUSTRALIA ROCKY BAY SENSORY ROOM, MOSMAN PARK

GLADSTONE LIONS PARK, GLADSTONE This inclusive park focuses sensory engagement with seven sections each based on a different sense. There’s a a sensory touch wall, adventure play area, water elements and a 'cosy dome' space for relaxing. www.gladstone.qld.gov.au/lions-park-gladstone

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Rocky Bay’s state of the art sensory room is designed to increase sensory stimulation, enabling people with disability to interact with and control their environment in a gentle and relaxing way.

The room is available to hire Monday to Friday. www.rockybay.org.au/news/sensory-room-hire/ 08 9383 5183 ISSUE 19

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SOURCE KIDS

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INCLUSIVE PLAYGROUNDS

BY BEC HO, TOUCHED BY OLIVIA

making play

more inclusive

IMAGINE… IT’S A SUNNY MORNING AND YOU DECIDE TO TAKE YOUR CHILD TO A PLAYGROUND, WHICH IS FULL OF PARENTS AND CARERS ENJOYING EACH OTHER’S COMPANY, SURROUNDED BY CHILDREN LAUGHING, PLAYING AND TAKING DELIGHT IN THE BEAUTIFUL SURROUNDINGS OF THE PARK. NOW IMAGINE YOUR CHILD NOT BEING ABLE TO PARTICIPATE. THEY CAN ONLY WATCH THE OTHER CHILDREN PLAYING AND HAVING FUN. SADLY, THIS IS THE REALITY FOR MANY FAMILIES ACROSS OUR CITIES AND TOWNS, WHO ARE FACED WITH THIS REALITY EVERY SINGLE DAY, AS ABOUT 300,000 CHILDREN AGED BETWEEN 5 AND 14 LIVE WITH A DISABILITY. 58

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This situation is simply not acceptable and we need to do much more to address this inequality. Our parks and playspaces are essential to the growth and development of our children. It is through play that children and young people learn to socialise, negotiate risk, challenge themselves, make friends, develop their imaginations and learn to make decisions.

Playgrounds and parks should be spaces where children of all abilities and from all walks of life can strive to work together to conquer challenges, imitate and learn from each other and build friendships, irrespective of physical or mental ability.

For the parents and carers, playspaces and parks are indispensable meeting points where support, friendship and relief can be found. Sometimes, just getting out of the house to walk to your local park might be the only outing a parent of a special needs child has for the day, so the importance of connecting with fellow parents and carers in an inclusive environment is paramount.

As the heart of our suburbs, our parks and playspaces must be places that welcome everyone, regardless of their ability and background. Through the creation of inclusive places, where children and carers of all abilities can come together to play and to support each other, our community will become more resilient, supportive, kinder and tolerant.

Work has started to ensure play is equal and available to all, but parents and helpers can help by asking what makes a playground inclusive? The NSW Government has recently invested significantly in the development of a new movement, supported by guidelines and grants. www.sourcekids.com.au

THE EXTENSIVE INFORMATION INSIDE THE EVERYONE CAN PLAY IN NSW PROGRAM COULD BE SIMMERED DOWN TO THREE BASIC, COMMON SENSE QUESTIONS THAT CAN BE ASKED TO DETERMINE IF A PLAYGROUND IS INCLUSIVE: Can I get there?

If you can’t get there, how are you going to participate? It is important to consider when designing an inclusive playspace the social connections and location on the community. Something as simple as being on the regular bus route can be a game changer.

When looking at the design, think about the layout. Are there any dangers?

Where will you park? Is it easy to navigate? One of our friends is a mother with a visual impairment who lives close to a great, inclusive playspace. She can’t access it, though, as there is nowhere for her to safely cross the busy main road to get there.

A considered location and layout, adequate parking, signage and wayfinding with accessibility will ensure everyone can find their way to, in and around the playspace.

Can I play?

We know that not everyone can, or wants, to have the same play experience.

But we urge designers to do the best they can to meet the needs of as many people as possible. The play experience as a whole, including the play equipment and surfacing, should enable everyone to experience a variety of challenging and engaging play opportunities in a way that suits them and is fun for everyone.

I’ll always advocate for experience over equipment. Social spaces, imaginative play, equipment that suits a multitude of needs and is adaptable in use can make an inclusive playspace really work.

Can I stay?

If you’d like to see inclusion become the norm, become a champion. It’s as easy as writing a letter to your local councillor asking them where is your closest inclusive playspace – and if there’s not one, WHY NOT?

Ultimately, every child has the right to play and experience the joy of play in a non-judgemental, safe and engaging environment. Inclusion should be an essential ingredient to every playground for ALL children, their families and friends to play and have fun.

Touched by Olivia is a national charity building inclusion through play. This goal is achieved by the construction of inclusive playspaces that we call Livvi's Place, in collaboration with communities, corporations and government. For more information, visit touchedbyolivia.com.au

HOLIDAY IN NOOSA Enjoy an all-ability family getaway in Noosa, and have your loved-one looked after by our highly experienced, disability support staff.

Sunshine Butterflies is a registered NDIS provider and disability support charity, providing unique daily learning, respite, educational and recreational programs for people living with disabilities.

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

courtesy of visitnoosa.com.au

Making deep connections happens when you’re given time. Things like shade, seating, a water bubbler will extend the time you can stay and play, and make new mates. Sufficient consideration of safety, amenities and the wider environment and landscape will ensure everyone can stay at the playspace for as long as they would like. A good coffee nearby is always a draw card too!

SOURCE KIDS

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BY RACHEL WILLIAMS

RARE VOICES AUSTRALIA

RARE VOICES AUSTRALIA

Making it 'fair for rare' THE BURDEN OF RARE DISEASE REMAINS UNACCEPTABLY HIGH ACCORDING TO ONE NATIONAL ORGANISATION FIGHTING FOR THE RIGHTS OF NEARLY 2 MILLION AUSTRALIANS IN THIS CATEGORY. Rare Voices Australia CEO Nicole Millis explains the progress being made towards addressing the inequality in the health system – effectively making it ‘Fair for Rare’.

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Why should medicine cost one sector of the community more than another?

Why should people with rare diseases be forced to wait longer than other patients for treatment and funding options?

Nicole Millis is acutely aware that these questions reverberate across Australia every day as thousands of families struggle with the reality of living with rare disease.

As Chief Executive Officer of Rare Voices Australia, Nicole is fighting for the rights of those in that situation but even detailing the magnitude of the number of people affected by a rare condition is a challenge.

“The greatest challenge in rare disease is limited data and a lack of knowledge,” Nicole states.

“The healthcare system does not even make the best use of what data is available. It does not even measure rare disease.”

It is understood that up to 2 million Australians, half of which are children, live with a rare disease in Australia alone.

“There are so many different rare diseases yet, they have much more in common than just small patient numbers,” explains Nicole.

“Rare diseases are often life-threatening or chronically debilitating. They are complex, requiring specialised care at considerable cost to families and the health system. “Most are genetic and therefore, not easily preventable. They are often incurable, many with no effective treatment and symptoms often worsen over time.

“The burden of rare disease remains unacceptably high and unfortunately, our health system is not well equipped to respond to the needs of those living with rare disease, being overwhelmingly geared towards supporting diseases that affect large numbers.” www.sourcekids.com.au

WHAT: Rare Voices Australia

WHO: Nicole Millis, CEO

WHY: The key purpose of RVA is to advocate for Australians living with rare disease as a unified voice and peak body. RVA works with patients, key peak bodies, Governments, researchers, clinicians and industry to promote rare disease research, diagnosis, treatment and services.

This inequality is something RVA has been determined to change since it was established in 2012, in response to a consensus call from over 200 national attendees at the inaugural ‘Awakening Australia to Rare Disease’ international Symposium held in Fremantle, Western Australia, in 2011.

RVA has since been advocating for effective rare disease policy that transforms people’s lives.

The organisation has developed a Call for a National Rare Disease Framework which includes six strategic priorities – Diagnosis, Access to Treatments, Data Collection, Coordinated Care, Access to Services and Coordinated Research.

Nicole reports that in November 2018, the Government formally committed to an RVA-led National Strategic Action Plan for Rare Diseases, to work towards a National Rare Disease Framework.

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Given there are 6,000 to 8,000 rare diseases identified globally, Nicole says the framework is imperative to help people at a physical, emotional, social and financial level.

“Significant diagnostic delay and misdiagnosis is common in rare disease, often referred to as the ‘diagnostic odyssey,’ yet we know that timely diagnosis is critical for better patient outcomes, best care, treatment options, access to services, support, increased reproductive confidence and participation in clinical trials,” she said.

“A recent Australian study showed that 30% of people with a rare disease are impacted by a delayed diagnosis of 5 years or more. 80% had at least one misdiagnosis.

“Australians are generally waiting anywhere from 2-4 years longer for access to Governmentfunded treatment for rare diseases than in comparable countries.

“Often, a medicine that will help a rare disease is only subsidised on the PBS for a more common disease. Rare disease patients have to pay more often for the same medicine.”

As an advocacy organisation, RVA is highlighting the plight of people with rare disease in the lead up to the Federal Election with a call to the Australian Government to make the health system ‘Fair for Rare’.

A Parliamentary Launch of Fair for Rare was held at Parliament House in February 2017 and the

priority document was presented to Minister Greg Hunt in June, 2017.

Fair for Rare has since been revitalised via social media with a digital tool to enable more people to more easily contact their local MP about the need for Fair for Rare and a National Rare Disease Framework.

The National Strategic Action Plan will provide evidence and recommendations for the new Government to progress a National Rare Disease Framework and improve outcomes for Australians living with rare disease now and in the future.

“In recent times, we have had great policy successes particularly in the areas of diagnosis, access to treatments and research,” she said.

“I believe Fair for Rare has been and remains crucial to this policy traction. It has always kept patient narratives central to the discussion, highlighting individual stories of people living with rare disease and linking them to the broader strategic priorities.”

Despite the limitations and gaps in the health system, effective rare disease policy will transform patients’ lives, she said.

“Often in rare disease, patient strength develops in spite of the system – imagine what could be achieved if our health system actively collaborated with this patient strength.”

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Paedaitric Podiatry and Footwear Specialists

www.littlebigfeet.com.au A fitted sheet that you and your child will love!

The Wonder Sheet was designed to facilitate your mobility in bed. The unique design can make turning and lifting your child easier because of the satin panel under their hips. Less friction, reducing the risk of skin breakdown and less effort is required from you when re-positioning, reducing any risk of future back injuries.

A visual approach to teaching literacy This innovative reading program has been designed to teach early reading and word recognition to both children and adults. It teaches sight words through fun, interactive and engaging activities, so that a diverse range of people can access the power and enjoyment of reading.

Find out where you can trial the Wonder Sheet NOW. NDIS REGISTERED

Email: info@readingourway.com.au Phone: (07) 3356 6655 www.readingourway.com.au ! ReadingOurWay

Kits can be purchased with NDIS Funding

‘The Wonder Sheet has made my life, my carer and my family’s life so much easier.

Everyone needs one.’ - Bailey Heddes

(07) 5591 1629 • info@neeki.com.au www.thewondersheet.com.au

YES! we are a registered NDIS provider

Large bodysuits to assist everyday living • full bottom coverage to help keep wandering hands out of nappies and pants

SIZE 4T TO E LARG T ADUL Back Zip can be worn day or night and also popular for aged care

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• deters inappropriate undressing and other challenging behaviour • tag free and styles to suit all seasons Tummy access for easier tube feeding

Our suits are available in toddler to large adult sizes

www.wonsie.com.au www.sourcekids.com.au

STATE DIRECTORY

Looking for a dentist for your child?

Providing specialist care for your child in a caring environment.

VICTORIA / TASMANIA

Introducing...

Topcat Treasure, specialising in washable continence products and supplies

Dr Evelyn Yeung B.D.S., D.Clin.Dent. (Paeds.)

181 Balcombe Road, Beaumaris Ph. 9583 1378

reception@happysmilesforkids.com.au hsfk_mrmiso

KingKids Early Learning Centres and Kindergartens Childcare that excites children and delights parents

Enquire about our inclusive programs - we cater to your unique child!

We are proud to bring our commitment in our ‘home away from home’ environments, with natural and inclusive play spaces.

Our Values: Fun & Laughter, Diversity & Individuality, Respect & Tolerance, Honesty & Integrity, Teamwork & Collaboration.

We are excited! We have finally released our new PSD Continence & Sensory Underwear range – a cool, funky continence underwear range for children & adults of all abilities!

Recommended by Australia’s Leading Continence Clinic’s such as Conquip Continence Services, be sure to ask for these colourful, quirky products at your next Continence Assessment.

Available Australia wide.

Berwick, Golf Links Road - 03 8786 7866 Narre Warren,Fleetwood Drive - 03 8790 5155 NEW!!! Rowville, 1165 Stud Rd 03 8738 8770 www.kingkids.com.au !

M

Creative Ballet • Contemporary Dance Supported Dance Classes We create a dance space where students develop both dance technique and creative potential in a supportive environment.

Enjoy our lovely studio which offers: Sprung Floor Tarkett Ballet Barre Air conditioning

Taking Enrolments • First Class Free www.creativelc.com.au 9375 7239 9 Moore St, Moonee Ponds

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

We would like to hear how you would like your NDIS plan managed Northcity Accountants are approved NDIS Plan Management Accountants based in Northern Melbourne.

Our service is available to you for free, if your NDIS plan already includes Plan management - ‘Improved Life Choices’.

Northcity Accountants Office Locations: Preston & South Morang

Contact Julius Mather, phone 0404 038 796 Email julius@accountantsandtaxagents.com.au

Give your child new freedom and independence this Summer with a TRIVEL adaptive Trike!

• Attain your therapy goals all whilst having fun!

• Designed for children from 4 to 10 years old.

• Featuring seat adjustment, lateral support back, adjustable and folding handlebar.

• Explore the great outdoors with your child this Summer… with a Trivel Trike.

Ph: 1300 953935 E: sales@stepaheadpaediatrics.com.au www.stepaheadpaediatrics.com.au

VICTORIA / TASMANIA

HSKsMrMiso

STATE DIRECTORY

ADVERTISE YOUR BUSINESS HERE

VICTORIA / TASMANIA

Physiotherapy to empower children with a disability or delay to reach their potential

AND TELL MORE THAN 25,000 PEOPLE ABOUT YOUR PRODUCT OR SERVICE!

Contact advertising@sourcekids.com.au to find out more.

0410 426 342 info@kidspt.com.au !$ @kidsptvic www.kidspt.com.au

Goal oriented, quality outdoor activities and camps for people with disabilities

PROVIDIN THERAPYG ALL OVER MELBOU RNE

• Single day and multi-day camp programs for children (from 6yrs+), teenagers and adults with a disability.

• Programs for people who require support ratios of 1:1, 1:2 and 1:3+ • Our goal focused programs are all about fun, trying new things, personal development, social connection and enjoying the great outdoors.

People Outdoors, a branch of the Australian Camps Association, was established in 1989 to provide outdoor recreation for people of all ages with physical or intellectual disabilities.

Contact us for advice on completing your NDIS plan – we can help you or your camper prepare, so that your plan includes the important benefits derived from our camp program.

The Australian Camps Association is a registered NDIS service provider certified with the Department of Health and Human Services (DHHS) and accredited with the Quality Tourism Framework.

Melbourne, Victoria • P: 03 9863 6824 www.peopleoutdoors.org.au PeopleOutdoors

Support for your child and family, every step of the way

Melbourne City Mission’s early intervention team is here for your journey.

Our qualified, experienced team support children with disability or developmental delay to achieve their goals.

Call 1800 343 287 www.mcm.org.au/ecis

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www.sourcekids.com.au

STATE DIRECTORY

VICTORIA / TASMANIA

Scholarships?

Education aids?

All-abilities play?

Assistance dogs?

Mobility equipment?

Learning assistance?

Amazing experiences?

Communication devices?

Variety - the Children’s Charity is here to help!

Variety – the Children’s Charity is committed to empowering children living with illness, disadvantage, or disability to reach their full potential. We believe all kids deserve the chance to achieve their dreams, regardless of their ability or background.

Contact us to learn how we can help your child or orgnanisation via variety.org.au.

STATE DIRECTORY

NSW / ACT

Parent Line counsellors are available to assist families who are affected by disability with information, parenting strategies, referral and support.

Parent Line is a telephone counselling, information and referral service for parents of children aged 0 to 18 years who live in New South Wales. We can also provide support and information for professionals working with families.

Parenting can be difficult at times and parenting a child with additional needs can bring extra challenges. Parents and carers can call our counsellors for support with a wide range of concerns from: Managing stress and anxiety Finding the right supports for your family Helping you find Early Childhood Intervention Services Support coping with a recent diagnosis for your child Helping you navigate the NDIS

1300 1300 52

facebook.com/parentlinenewsouthwales

Parentline.org.au

PLine010

Parent Line NSW

NORTH WEST AND WESTERN SYDNEY

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

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

Mobile service providing supports at home, child care centres, schools, playgroups or at our clinic.

02 9622 8500

growingearlyminds.org.au Growing Early Minds is an initiative of Growing Potential Ltd.

NSW / ACT

• • • • •

STATE DIRECTORY

NSW / ACT

SDN Children’s therapies Autism and developmental delay specialists

Contact ange us to arr a free tion consulta

Therapy and support as unique as your child

www.sdn.org.au/childrenstherapies 1300 831 445

STATE DIRECTORY

Follow ids Source K ON INSTAGRAM AND FACEBOOK

AND GET YOUR DAILY DOSE OF INSPO & INFO!

$ @sourcekidsmagazine ! @sourcekids

NSW / ACT

Meet Sophie…

she’s part of our Allowah Family Can you tell me a bit about your family?

Our family consists of us, Adam and Beck, and our daughter Sophie.

How would you describe your family in three words?

Close, love, team.

How did you come to be part of Allowah?

We first heard about Allowah though a friend whose child also stays at Allowah. They basically told us that we had to contact Allowah, as it would change our life!

What have your experiences been of raising a child with disabilities?

We have had both challenging and rewarding experiences. Shopping or social gatherings out in public are often challenging for us. Sophie does not always enjoy these experiences and this can often result in a meltdown. A lot of people do not understand or have empathy for Sophie and the situation. Beck and I have definitely had some bad experiences! On the other hand, we have had some beautiful experiences with strangers who have gone out of their way to help us in a bad situation by providing love, care and support.

How have you found the care at Allowah? What do you think the best part of Allowah is?

The care at Allowah is amazing! No words can describe the love and care shown towards all the children. Every staff member at Allowah, from nursing to cleaning and admin, treat Sophie like she is their own daughter! I honestly think the care for Sophie is what we like best. We can drive away after dropping Sophie off, knowing that she is safe and will be looked after in a loving, caring environment.

What are some of the joys or highlights that your family enjoys?

We get joy from simple things such as a smile from Sophie or a laugh at something we do with her. A recent highlight was Sophie’s 10th birthday. We had a large party, filled with family and friends.

Everybody had a great time, especially Sophie!

What are some of the big life lessons you have learnt while raising Sophie?

The biggest lesson we have learnt is to put things in perspective. Small problems that may have bothered me in the past no longer bother us. Having a child with special needs really is a great ‘leveler’. It really makes you realise what is important in life!

What are some of the challenges that your family faces? How do you face them?

Sophie stimulated in a safe environment. Beck and I also love to exercise. We find this to be a great stress reliever, giving us an outlet.

We face many challenges with Sophie as she continues to grow and get bigger. Sophie is now ten and still cannot walk, talk, feed, toilet or change her own clothes. Sophie is 100% reliant on us as her parents. To compound this, Sophie has more meltdowns which result in her screaming, punching, kicking and head-butting. I think a lot of this is due to her frustration of not being able to walk, talk and communicate like other children. We face these challenges by getting regular respite with Allowah.

This enables us to recharge our batteries and provide the support Sophie needs when she is at home with us. We also have strategies in place to ‘try’ and keep

What are your dreams or hopes for Sophie and your family?

All we want and hope is for Sophie to be happy. If she is happy then the rest will fall into place! I would also just like to add that without Allowah we do not know where we would be. Beck and I were at breaking point before Sophie started at Allowah and they have changed our life. We will be forever grateful.

Allowah provides Disability Support services for children aged 0 - 18 years with complex disabilities and medical conditions.

disability support services

Complex Disability and Health Provider

• Short term accommodation Planned or Emergency • School Holiday programs • Post surgery care • Early intervention • Therapy Services • After school care • Support Coordination (children and adults with complex needs) • Many other supports including Assessments, Equipment advice and so much more

Allowah 8 Perry St Dundas Valley NSW 2117 02 8877 3400 admin@allowah.org.au

allowah.org.au

STATE DIRECTORY Supporting, advocating and empowering people with Down syndrome • Information, support and resources for families, employers, service providers and health professionals • NDIS support and services • Education support • Workshops and training • Community awareness and systemic advocacy MEMBERSHIP IS FREE JOIN UP TO RECEIVE REGULAR NEWS AND UPDATES

QUEENSLAND

LEGO HEAVEN!

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

Shop D, 1 Finucane Road, Capalaba QLD 4057

Email - office@downsyndromeqld.org.au Phone - 07 3356 6655 www.downsyndromeqld.org.au ! DSQLD

Phone: 07 3390 1288

www.bricksnfun.com.au

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

Phone 0456 017 779 for your next holiday hire or purchase

“Our support is unique to each individual” Quality In-home supports for people with disabilities living in QLD • Accommodation support • Personal and household care • Community access • Community and lifestyle support • Respite and advocacy

QUEENSLAND

Why choose Your Way Support Services?

• A unique service • Advocate what’s important • Proactive responsibility • Direct communication • Working funding packages • Competitive rates • Autonomy and choice • Employment opportunities • Community engagement

Erin Christian—Managing Director

Contact us on (07) 5330 1973

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

www.ywss.com.au

STATE DIRECTORY

QUEENSLAND

We are proud to offer: • A unique and personalised service from the initial trial to the final delivery • All trials completed by our professionals in the comfort of your home, school or place of care • Specialising in customised manual wheelchairs, shower commodes and special needs tricycles • A quality range of paediatric wheelchair seating options

www.ssmobility.com phil.bugg@ssmobility.com Ph: 07 5495 5068 ! signatureseating Registered NDIS Provider

QUEENSLAND

Beautiful Bathrooms Designed Around Your Abilities

✔

DISABILITY

EXPO BRISBANE BRISBANE CONVENTION AND EXHIBITION CENTRE

5-6 JULY • 2019

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

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

Subnscorwib! e

AND HAVE SOURCE KIDS DELIVERED RIGHT TO YOUR DOOR!

SUBSCRIBE FOR JUST $35 12MTH/4 ISSUES PER YEAR

RELEVANT, RELIABLE + POSITIVE INFORMATION AT EVERY STAGE OF YOUR CHILD’S JOURNEY.

SUBSCRIBE BEFORE APRIL 5 AND GET ONE FREE ISSUE

Visit www.sourcekids.com.au to subscribe

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www.sourcekids.com.au

COMPETITION

SOURCE KIDS

|

COMPETITION CORNER

WIN ONE OF THESE GREAT PRIZES

BY ENTERING ONLINE AT www.sourcekids.com.au/win

WIN!

WIN A JOSH THE ROBOT SET OF 5-BOOKS, VALUED AT $60.00 Jump on board for your chance to enjoy the full set of 'Josh the Robot' children's books, written and illustrated by talented Down syndrome author and artist Peter Rowe. Join the adventure as Josh the Robot teaches us all about the importance of inclusion, kindness and that it's ok to be different.

WIN!

peter-rowe.com.au

WIN A BACKSEAT CARMA, VALUED AT $149.00 Are the kids distracting you in the car? Divide and conquer by installing the Backseat Carma, a child friendly back seat divider. The Backseat Carma is helping parents of special needs children restore calm to their car journeys. It's been designed to block kids' view and reach of each other without blocking the driver's rear-view vision. It also comes with a seatbelt buckle guard to ensure it remains in place.

So... no more fighting, snatching of toys, kicking or stressful journeys.

Plus, it’s super-easy to install by threading the seat belt through the middle. www.backseatcarma.com

WIN! WIN A BACK ZIP WONSIE, VALUED AT $49.95 The unisex Wonsie back zip bodysuit is specially designed to help deter challenging behaviour by preventing inappropriate self undressing and access into nappies and underwear. The off-centred back zipper ensures comfort when lying down and the press-studded tab helps to prevent access to the zipper. The size range caters for toddlers through to adults making them popular for aged care and can be worn day or night. wonsie.com.au/collections/back-zip-wonsie

!$

SENSORY TOYSTORE excite the senses of the young and young at heart Range includes:

• Fidget toys • Kinetic sand • Fine Motor Skills • Chewing • Tactile • Educational • Sound & Light

SENSORY TOYSTORE

0423 154 584 !$ NDIS PROVIDER www.sensorytoystore.com.au

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TiLite Pilot Rea

Watch your kid soar in the ultra-lightweight TiLite Pilot.

Finally, a chair that moves and grows with your child.

www.permobil.com.au info.au@permobil.com