Source Kids Spring 2017

ISSUE 13 | SPRING 2017

THE

DAD ISSUE DADS IN CONVERSATION SUPER DADS DEALING WITH

DIAGNOSIS

HOW FAR WOULD YOU GO? • ALTERNATIVE REHABILITATION • SENSORY GARDENS • HOME DESIGN

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Need help?

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

For families of children who are sick, disadvantaged or who have special needs, finding support can be a challenge. Each year, thousands of these children and their families turn to Variety for support when they need it most. If you or someone you know is struggling to cope, Variety is here for you.

Visit our website or give our friendly team a call on (03) 8698 3900.

variety.org.au

contents

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FEATURES AND ARTICLES 8

DAD FEATURE

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Dads in conversation Lifestyle tips for stressed-out dads Super dads How dads deal with diagnosis

INDA FOLD UP SEAT BY AVAILCARE This seat is a great addition to any bathroom shower, allowing its user to relax and enjoy their private time.

35cm x 35cm square, it has a 150kg weight rating and is available in white and black.

WE LOVE

www.availcare.com.au

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Alternative rehabilitation

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Sensory gardens

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Product feature – how does your garden grow?

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Home design – tips and case study

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Cornelia de Lange syndrome

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How far would you go?

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Sporty kids – wheelchair rugby

REGULARS 5/7

We love

6 Welcome 20

Special needs teacher in profile – Michael Pepprell

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Competitions

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Cooper’s travels

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Family profile – meet the Heffernan family

SKOBI FOOTWEAR

BY LITTLE BIG FEET Skobi is Australia’s first range of shoes designed and founded by paediatric podiatrists.

Engineered to meet the needs of the schoolyard and the children who play in them. www.skobishoes.com.au

COVER Photography by: Renee Photography

STREET SMARTZ

BY SILLY BILLYZ

Models: Chris and Jack Duffy.

Designer bandana bibs that are reversible and waterproof. Made from cotton and soft towel fabric, they have three snap closures for easy fixing on and off.

Jack has cerebral palsy spastic quadriplegia.

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www.bpmchildcare.com.au www.sourcekids.com.au

WE LOVE SWRING

SMART DRIVE BY PERMOBIL The first activity monitor specially designed for manual wheelchair users.

An exciting new play experience has hit our shores. Similar to a tyre swing, the SwRing rotates, spins and swings all at the same time. This has become a powerful tool for children on the spectrum and has proven therapeutic value. www.swring.com.au

www.permobil.com.au

HAND HUGGA SUPPLIED

BY THE RHYTHM VILLAGE

SEAHORSE PLUS

BY PME GROUP

A comfortable and easy to wear glove designed to help those who find it difficult to grip and hold onto objects. It closes and supports the hand enabling the wearer to complete everyday tasks with ease. Made from durable neoprene in three sizes, it is designed for regular use and can be worn on either hand.

The updated multi-purpose hygiene chair is height adjustable and has four tiltin-space positions making showering and bathing effortless for both child and carer. The Seahorse Plus is available in three different sizes.

www.handhugga.com

www.pmegroup.com.au

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WELCOME

welcome

TO SOURCE KIDS

SOURCE KIDS LIMITED PO Box 5279, Launceston TAS 7250 P: 03 6327 1995 ABN: 36 614 552 171 www.sourcekids.com.au Send all letters and submissions to: editor@sourcekids.com.au P: 03 6327 1995

EDITORIAL Editor: Marie-Louise Willis editor@sourcekids.com.au

WRITERS AND CONTRIBUTORS Marie-Louise Willis, Rachel Williams, Emma Price, Naomi Sirianni, Rachel McGregor, Alex Hills, Pepper Smith, Liz Ainsworth, Aaron Stowe, Debbie Evans, Tiffany Chan, Simon Tiller, Peter Georgiev, Bron Leeks, Tammy King, Susie Smith, Lenice Heffernan, Michael Pepprell, Andrea Cole, Chris Duffy, Frank Caracoglia, Johan Moll, Tony Kearney, Alwyn Blayse

ADVERTISING Naomi Sirianni – 0447 755 043 advertising@sourcekids.com.au Liz Kolisnyk – 0499 017 354 liz@sourcekids.com.au

DIGITAL Digital Editor: Nicole Davis nicole@sourcekids.com.au

Hello spring! Does anyone else have a spring in their step and is happy to see the back of the winter months? It has been rather chilly in my neck of the woods and I for one will happily welcome some warmer spring days!

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

PUBLISHER Emma Price

We’ve given Source Kids a spring clean and refreshed our magazine design this issue to bring you a bright, fresh and fun Source Kids magazine! What better time to launch a new look than in spring?

This issue is our ‘Dad issue’ – our first issue dedicated to all those amazing dads out there, who go largely unnoticed but are oh so important in our kids' lives. Father’s Day is just around the corner so we thought, why not celebrate this by profiling some incredible dads, understand their innermost thoughts on being a dad to a child with a disability and hear from some professionals about dealing with diagnosis and coping with stress experienced by dads. We’ve had such a great time getting to know these incredible blokes, we hope you enjoy the read.

This issue we also cover home design and creating a home that is both stylish and accessible, a range of alternative rehabilitation methods to suit a range of needs, sensory gardens, plus how far some parents go with controversial surgery for their children.

And… we’ve got something super exciting to share with you in our summer issue due out in December. Follow us on social media or our weekly email updates and we’ll reveal all shortly!

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

In the meantime, pick some flowers from the garden, pour a cuppa and enjoy those spring aromas while you read this issue.

Emma Emma Price

CEO/FOUNDER

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WE LOVE

DIY MODIFY This free app is designed for people with a disability to do their own home modifications.

NATIONAL CARERS WEEK 15-21 OCTOBER National Carers Week is about recognising and celebrating the outstanding contribution unpaid carers make to our nation. So, pour yourself a cuppa and give yourself a pat on the back for everything you do. Or join in one of the events nationwide.

Providing information and support for making changes to a home, for comfort, for safety and easier living.

Download through Google play or the Apple App store.

www.carersweek.com.au

RONALD MCDONALD FAMILY RETREATS BY RONALD MCDONALD HOUSE CHARITIES

SALLY AND POSSUM SHOW

BY ABC TV

Families of children with serious illness can often suffer enormous physical, emotional and financial stress. RMHC Family Retreats offer a welcoming and peaceful environment to relieve a little of this stress, far away from the hospital atmosphere. There are currently six retreats across the country. www.rmhc.org.au

Currently in its second series, this is a beautiful video sequence for young children and their families who use Australian sign language (Auslan) as their primary means of communication. www.sallyandpossum.edu.au

ACCESS 4000 Disability Support QLD has created an app for those with accessibility needs that allows the user to target the sort of venue they desire to access with the required features that venue must have. Download this free app via the iTunes app store.

WONDER Written by: RJ Palacio

Published by: Penguin Books Australia

We can’t wait for the movie, starring Julia Roberts, Owen Wilson and Jacob Tremblay to be released (release date in Australia is 30 November if you’d like to mark your calendars). But… did you know that the unforgettable and life-affirming story about August Pullman – a boy who's desperate to blend in, but is destined to stand out – was originally an internationally bestselling novel?

Auggie Pullman is a 10-year-old boy who was born with facial abnormalities and has undergone 27 surgeries but now he faces his toughest challenge – going to mainstream school. Perfect to read to your children or as an indulgent (and teary) read on your own. Let Auggie charm you on the page before you see him brought to life on the big screen.

WE HAVE SIX COPIES TO GIVE AWAY – GO TO... www.sourcekids.com.au/win to enter.

GET SOCIAL WITH SOURCE Follow us on social media – Facebook, Instagram, Twitter, Pinterest, YouTube – you name it we’re there.

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COME AND GET SOCIAL WITH US! www.sourcekids.com.au

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BY MARIE-LOUISE WILLIS

DAD FEATURE

S D A D N O I T A S R E CONV in

MEET OUR We see and hear so much about mums and how they cope with their parenting journey.

THE DADS: NOT SO MUCH. What we do know is that dads are important. What they do and who they are bring so much to our family lives, our personalities and create a richness and diversity in our upbringing.

WE WANTED TO CELEBRATE DADS – AND TRY TO UNDERSTAND THEM A LITTLE BIT BETTER – SO WE GATHERED A GROUP OF AWESOME GUYS, ALL OF WHOM HAVE A CHILD WITH A DISABILITY, AND ASKED THEM THE TOUGH QUESTIONS.

DAD PANEL CHRIS DUFFY married to Erin and father of Jaimie (13), Xavier (12) and Jack (11). Jack has cerebral palsy spastic quadriplegia. They live in Tasmania.

FRANK CARACOGLIA married to Joanne and father of Joseph (13), Christian (11) and Jacob (seven). Jacob has Angelman syndrome. They live in New South Wales.

JOHAN MOLL married to Sally and father of Maxwell (15 months).

Maxwell has hypoplasia of the corpus callosum, hypertonia (low muscle tone), developmental delays, visual field abnormality, dysplastic kidney, undescended testicle and they are waiting on the results of cardiologist and genetic testing. They live in Victoria.

TONY KEARNEY married to Amanda and father of Jamie (eight) and Dylan (six). Dylan has Down syndrome. They live in Victoria.

ALWYN BLAYSE married to Jo and father of Flynn (five). Flynn has autism. They live in Queensland.

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IT WAS A SHOCK...

extremely

D E M L E H W R E V O

I’m the father, .. the caregiver.

HOW DID YOU FEEL WHEN YOUR CHILD WAS DIAGNOSED? Frank - It was a shock. We had never even heard of Angelman syndrome before. At the beginning, we didn’t know how to deal with the diagnosis and we distanced ourselves from friends and family. But once we accepted it, we began to research and thought the best way to help Jacob was to raise awareness about AS and become more proactive.

Chris - Erin was at the hospital with Jack when she was informed that he had brain damage and the way the news was delivered was not the best. Erin rang to tell me – and it was the most devastating call I have ever received. I was angry for the way Erin was being treated and the little support she had when the news was delivered. I was frustrated at being so far away. I was upset because I didn’t really know what was going on but most of all I felt useless. I didn’t know what I could do to help besides getting to them as soon as possible.

Johan - I was extremely overwhelmed by emotions. I didn’t know what my child’s new normal would be or how much our lives would need to change to support him and give him the best possible start. You have all these

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preconceived ideas in your head of your son potentially following in your footsteps, and knowing that that’s not going to happen is something I still struggle with.

Tony - Dylan was diagnosed with Down syndrome approximately 30 minutes after being born – no scans prior revealed any concerns or diagnosis. The diagnosis was a complete shock and I guess I was in denial initially and perhaps angry but I was quickly snapped out of it after learning that Dylan was experiencing breathing issues and my only thoughts were for his health and safety.

Alwyn - I had mixed emotions. We went to the appointment as a family to deal with Flynn’s behaviours that we believed stemmed from anxiety.

The psychologist gave me a checklist to complete for Flynn, and as I went through it I realised that so many of the boxes I could’ve checked for myself. We ended up leaving with a diagnosis of autism for both myself and Flynn. Suddenly so many things made sense and there was a huge sense of relief for myself but also so much guilt for what we were putting Jo (my wife) through.

DID YOU FEEL SUPPORTED? Chris - At the time of diagnosis, I would say no. There was one nurse in the hospital who sat with us at times to try and explain what was going on but there were so many questions that no one had the answers to. In retrospect, we can see that people were trying to help us in a very difficult situation but we still believe there are things that could have been handled a lot better. The support from family, friends and the local community was amazing, though. People even volunteered to look after our business while we were in and out of hospital, which took a massive load off our minds.

Frank - In the beginning, no. We felt like we were in a dark void and no one understood what we were going through. It wasn’t until we found out about FAST, that we felt there were answers out there and others going through the same thing we were.

Tony - We actually felt very well supported by the medical professionals. We are lucky enough to have a great GP and Paediatrician. Unfortunately, we do

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My role as a husba n d a nd , r e h t a f e h t m I’ father is to support a nd .. r. e iv g e r a c e h t protect my fa mily a s mu c h as possible. I try to fo c us o n g iving both of my kid s as mu c h quality time as poss ible.

not have much family in Melbourne, which has been challenging, but having the support of my sister-inlaw on the other side of the city and great support from our fantastic mothers’ group has been invaluable and we will be forever grateful for.

Alwyn - The medical professionals were great. It was harder with some

personal relationships. Some people we would’ve expected to be there for us weren’t and others we didn’t know well came through for us.

WHAT DO YOU FEEL LIKE YOUR ROLE IN THE FAMILY IS? Chris - My role in the family is to be as annoying as I possibly can be to

my kids and I believe that I am doing a very good job at this. Besides excelling at this primary role, I am very lucky in that Erin and I share all the roles in the house besides paperwork (things would fall apart if I was put in charge of paperwork).

There is no such thing as mum or dad jobs in our house.

F rank - I’m the father. I’m the caregiver. Both my wife and I have

to be more active in Jacob’s care, much more so than with our other two kids.

Johan - I need to be the leader in our family and willing to make

the hard decisions but also be a husband who is sensitive to my wife’s needs.

Tony - My role as a husband and father is to support and protect my

family as much as possible. I try to focus on giving both of my kids as much quality time as possible. I treat both of my kids equally and try to have as much fun as possible with them and to try to mould them into the best little humans that they can be.

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HAS THIS ALTERED IN ANY WAY AFTER HAVING A CHILD WITH A DISABILITY? HOW? Johan - It has forced me to become more of a leader and mature faster.

The big difference I think is that it’s made me see life in a different way. I just don’t take any time with him for granted. The phrase ‘life is short’ has a whole new meaning to us.

T ony - I find myself being over protective at times when we are out in public and I try not to notice people staring or making comments about Dylan or his friends but most people do this out of curiosity or a poor understanding of Down syndrome. I try not to take these experiences personally and at this stage Dylan doesn’t notice these things but like any father I just want the best for my children and I will do anything to protect them from being hurt or feeling uncomfortable.

Chris - Our family has grown to include the whole Just Like Jack community and I like people to be able to look at what Jack and I do and realise that there is nothing stopping them doing the same with their children.

now and my relationship with Jo is stronger than ever.

Frank - I have had to learn to be more patient and understanding but on the flip side, I have become more stressed, worried and anxious.

Johan - Having a child with a disability really does stretch you and you have your good days and your bad days. Luckily for me I have an amazing wife and we vent in a healthy way to each other. Being a parent is fun. It’s hard but how amazing is it when your little bundle of joy just smiles at you for the first time? Or says your name? Or even tells you that he/she loves you for the first time? All of that makes all the hard bits worthwhile.

HAS HAVING A CHILD WITH A DISABILITY CHANGED YOUR RELATIONSHIPS?

Chris - I do believe that having Jack has changed me for the better as a person and as a parent. We both realise how important it is to make sure you make the most of every second of your life.

Chris - Having Jack has made me realise how lucky I am to have a wife like Erin. We went through some very hard times together but came out the other side of it all with an amazingly positive attitude and the desire to show people that there is always someone worse off. It’s also highlighted how strong and supportive our extended friends and family are. We couldn’t get by without them. They love Jack and would do anything for him and us as well. We can honestly say that Jack has bought more people into our lives than the other way around.

Sometimes the social setting has to be adapted but everyone is more than accepting of that.

Alwyn - Yes – I am so different.

I have had to learn to be more patient as frustration just doesn’t help. Perhaps it’s because I had the chance to have some counselling after my diagnosis but I am happier

Johan - I believe that my beautiful wife and I have become so much closer. We have had some tough times in the past but because of that we came out stronger and it’s allowed us to unite together and

HAS HAVING A CHILD WITH A DISABILITY CHANGED YOU AS A PERSON?

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Frank - The number of friends we have met along the way who are

dealing with the same issues we are. I also never thought I would have the courage to be a public spokesperson for my son.

Alwyn - I’ve really seen how good can come from any situation, and

learning about autism and the strategies to manage my son’s difficulties has really helped me learn about myself and, also, how to help some of the elderly people I work with.

take this challenge head on. I’ve found I also value our parents more.

Without their support, we would be struggling. It’s like the old saying: ‘it takes a village to raise a child’.

Without our family, it would have been tough. Really tough. Friends have been amazing as well and really helped us to keep things as normal as possible.

WOMAN TEND TO CHAT ABOUT OUR ISSUES OVER A COFFEE/ WINE WITH OUR GIRLFRIENDS, OR BLOG, OR BOTH. WE VERY RARELY HAVE MEN BLOGGING ABOUT THEIR LIVES AS A SPECIAL NEEDS DAD. HOW DO YOU COPE? WHAT IS YOUR OUTLET?

Tony - My wife is an amazing person.

She always puts herself last to ensure that we are all happy and well looked after. I cannot thank her enough for all that she has done for our family. My daughter Jamie is an amazing little girl who is growing up so quickly and she and Dylan get along so well together. I think her life will be enriched by having Dylan as a brother. We are lucky enough to have a very caring network of family and friends in Melbourne and interstate who we are very grateful for.

Chris - My real outlet is exercise and convincing myself that I am doing something good for the special needs community through what I am doing with our Just Like Jack organisation. I now chat about Jack at every opportunity – whether that’s with Erin, friends or at formal presentations. This helps me focus on the positives in our life (how we wouldn’t be where we are today) and allows me to share the message that we will all face massive challenges in our lives but to let others help you work your way through them, you don’t have to do it all yourself. The other message I like to get across is to look at the priorities in your life, if you are not happy with what you are doing then change it.

WHAT HAS BEEN THE HARDEST PART TO COPE WITH? Frank - Just knowing that Jacob won’t have a typical upbringing and will need care for the rest of his life is very hard to deal with.

Johan - The unknown is the hardest.

Knowing that all the specialists don’t even know what is going on. Not being able to plan or have any idea what the future looks like for him is tough. Really tough.

Tony - Probably my expectations of the path that I thought we would be on. No one expects this to happen to their child and I guess the normal daily challenges of parenthood that are magnified by Dylan’s diagnosis sometimes makes it challenging.

Alwyn - Judgement from other people – especially those who don’t view autism as a ‘real’ diagnosis or think that Flynn’s difficulties are due to poor parenting. I’m also worried about how the world will treat him.

I don’t want him to be bullied or taken advantage of.

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Frank - Like most men, I bottle everything up but usually just hanging out with friends or training allows me to let out my frustrations and to just take a step back from the daily grind.

Alwyn - I like to play on technology for a bit of me time, get to the gym or go for a walk and I get a lot out of work and talking to my clients.

Johan - I am a very easily pleased man. I love to BBQ with friends and family, enjoy a good beer with my mates and fishing, of course. I do enjoy a good chat. My clients are like family to me so we tend to talk a lot and most of the time I do talk about all things Max.

WHAT HAS SURPRISED YOU THE MOST ABOUT THIS JOURNEY? Johan - How a community can come together and also seeing what we are truly capable of even when things get a bit tough.

Tony - I have been amazed by how many wonderful and caring people

there are out in the community who give their time and are passionate to assist those who are less fortunate than themselves.

Chris - How Jack has changed our lives for the better. Having had

limited exposure to the special needs community previously I always felt pity for the individuals living with the special needs - as well as their families. I now realise how wrong I was.

Who said men don’t like to share their innermost thoughts? Their full transcripts will be posted online.

WE LOVE

JOURNEYS IN FATHERHOOD Journeys in Fatherhood is a collection of heartfelt and honest reflections on being a father: the highs and lows, the dangers, and the opportunities to be the best dad you can possibly be.

In this anthology many men describe their personal experiences of fatherhood. This book includes tips and practical tools, and invites you to consider different ways of being a parent.

Go to www.ntvmrs.org.au/trainingresources/publications for more information or email: communications@ntv.org.au with your name and postal address to receive your free copy.

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LIFESTYLE TIPS FOR STRESSED-OUT DADS THERE IS NO DENYING THAT BEING THE FATHER OF A CHILD WITH SPECIAL NEEDS IS A CHALLENGE, BOTH EMOTIONALLY AND PHYSICALLY. ALEX HILLS, GradCertEvidBasedCompMed, BHSci (Comp Med), AdvDipNat, AdvDipWHM

Parenting a child with any type of special needs affects everyone in the family differently.

Fathers tend to turn to their work as a common coping strategy. You are often the breadwinner of the household, which can make it difficult to attend every medical and therapy appointment, no matter how much you want to be there.

In a 2012 study surveying fathers of children with disabilities, findings indicated that these fathers experienced greater stress in daily parenting hassles, family life events and changes, parenting stress and health stress. This may come as no surprise! But what happens to you when this stress starts to build up?

STRESS SIGNALS Stress is one way your body is trying to tell you to pump the brakes and manage the situation before you have any other health consequences.

Stress can take its toll in many ways. You can either head down the path of mental health stress, such as anxiety and depression, or it can manifest as a physical stress. Have you ever found yourself with aching and tired joints and getting those ‘old man’ creaks that you swear weren’t there this time last year?

EASY WAYS TO DRIVE OUT DAD-STRESS...

A few simple lifestyle changes can not only make a large impact to your health and wellbeing, but can also keep your mental alertness in check – improving productivity at work and at home. Some suggestions that can easily fit into your daily lifestyle include: TIME-OUT Okay, your first reaction to that suggestion is probably, “What time!?” but there is good news. Research shows that just five minutes of quiet time a day can have a positive impact on stress and cognitive function.

Making a real effort to find five minutes of quiet space a day to close your eyes or be in a dark/dimmed room and do a few deep breaths can do wonders. A 10-minute daily walk can also be very beneficial.

KEEP HYDRATED Ensure that you have a glass of water at arm’s reach. Studies have shown that even if you are just one per cent dehydrated, you can have a decrease in cognitive function by up to five per cent.

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BE FISHY Omega-3 plays a crucial part in both mental and physical stress. You could say it is like killing two birds with one fish! Did you know that only 20 per cent of Australian men meet the recommended Omega-3 intake to maintain health and prevent deficiency?

Without adequate intake of these fatty acids, the highly active and delicate cells found within the brain and nervous system cannot function properly.

You could achieve the brain-powering effects of omega-3 by sitting down to a delicious plate of sardines every single day, or just pop a fish oil capsule to assist in reducing the risk of declining cognitive function.

KEEP BEING AWESOME When you are so busy and focussed on looking after your family, it is easy to forget about your own health. Taking care of yourself, so you can be there for your family, just makes sense. Make your parenting life the best it can be, by ensuring you are fit and well to make the most of it!

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BY RACHEL WILLIAMS

SUPER

DADS

IT TAKES A SPECIAL PERSON TO RISE ABOVE THE ORDINARY AND CREATE A LEGACY FOR THE GREATER GOOD. Two dads within the special needs community are doing just that – inspiring local communities on the journey to create better awareness and raise vital funds to benefit others with similar disabilities.

The stories of Sydney builder Frank Caracoglia and Tasmanian firefighter Chris Duffy are very different but they have one thing in common – a sheer determination to do everything they can for their sons and to raise the profile of their individual causes.

Frank's son Jacob was 18 months old when he was diagnosed with Angelman syndrome – a rare neuro-genetic disorder that affects speech and mobility, and causes severe intellectual and developmental delays.

Frank and his wife Joanne soon became involved with FAST (Foundation for Angelman Syndrome Therapeutics), which aims to improve the quality of life for 'Angels' through funding research, education, and advocacy.

FAST's focus is funding for research into treatments that will improve the symptoms

of Angelman syndrome and ultimately that will provide a cure.

ambassadors as I could to achieve awareness,” Frank says.

“When we became more involved with FAST, we found out how much funding was needed to help find a treatment or a cure for AS and since it is such a rare disorder, it wasn’t getting enough funding from other sources,” Frank recalls.

“It first started out when Jacob had his first seizures and I had spoken to Damien Cook from the Rabbitohs about jumping on board with FAST and when he heard Jacob was at hospital he rang me the night after and told me he was going to write Jacob's name on his wrist at his next game.

“My wife and I decided we wanted to do more.”

And, do more they have. Together they have raised thousands of dollars through different events.

That figure is expected to rapidly increase as they consolidate a relationship with the NRL. South Sydney Rabbitohs player Damien Cook and Canterbury-Bankstown Bulldogs star Sam Perrett are ambassadors for the foundation and the exposure from a recent segment on the NRL Footy Show has put Angelman syndrome in the spotlight.

Frank recalls his persistence when initially trying to establish a relationship with the league's stars.

“Well I was on a mission to get as many

“I was feeling very emotional with the support from Damien – he was a player from the club I had followed all my life so it was the greatest feeling I have ever felt. It felt like Jacob was running out on the field with them and it was an amazing feeling.

“I wanted all the Angels and their parents to feel the same emotion, so I took names down of as many Angels as I could and every week I would give Damien a name to sketch on his hand.

Sam Perrett followed suit and his position on the field ensured greater traction off it.

“He was a winger and a try scorer – every time he scored a try and the tv cameras were filming he would point at the name on his hand and it was broadcast on national tv and then everyone started talking.”

Social media played a role as Frank battled to ensure the player support translated into funds from fans of the game.

He recalls tagging journalist and TV host Erin Molan in his posts for nearly a year and a half to get her attention.

The persistence paid off.

After a number of newspaper articles and more support from NRL players Sia Soliola and Curtis Rona, Frank finally got his big break.

“About a month ago I got a phone call from Damien saying that the Footy Show wanted to do a story about us. I jumped at the chance!

“They came to my house and Damien and myself were interviewed by Erin Molan and we got a whole 10 minutes on the Footy Show and I felt so complete that I had achieved national tv and shed a light on Angelman syndrome and that I did what I had set out to achieve.”

Frank Caracoglia with son Jacob, wife Joanne and South Sydney Rabbitohs player and FAST Ambassador, Damien Cook.

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The relationship with the NRL will be further

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THEY MAKE THIS WORLD A LITTLE BIT OF A BETTER PLACE FOR ALL OF US. strengthened as we go to print - Souths will play Canberra during round 21, with Jacob to run out with the Rabbitohs and details about FAST to be promoted on the day.

“So the NRL has helped us get national coverage thanks to the help of our awesome ambassadors who are helping our special and beautiful children.”

Chris Duffy has taken a more scenic route to get exposure for his son Jack, who has cerebral palsy spastic quadriplegia. Jack has limited use of his arms and legs and is unable to communicate verbally.

Together with wife Erin, Chris has embarked on a number of different journeys to raise awareness about what can be achieved when children like Jack are given a helping hand.

In 2009, Chris kayaked from Launceston to Hobart via the East Coast of Tasmania paddling over 600km in over 13 days raising $70,000 for service provider St Giles, who have helped the Duffy family since Jack's diagnosis.

In 2015, Chris carried Jack across Tasmania's iconic 65km Overland Track with a support crew involving police, firefighters and a paramedic, as well as Tasmanian television presenter Rachel Williams, who made a documentary, Overland Jack (which aired on Southern Cross Television and is now available for view on YouTube) about the journey. Together the team raised over $30,000 for Life Without Barriers.

Last year, Chris and a group of supporters took on the world's toughest half marathon, the Point to Pinnacle, with Chris pushing Jack in a special running chair.

“We have always wanted to do things with Jack while we have the chance - it will get more challenging to do some of these things as Jack gets bigger,” Chris says.

this year with the aim of having five children in running chairs at the top of the Mt Wellington finish line.

As we go to print, the Just Like Jack team is organising a special launch party of the organisation, which has Hawthorn Premiership star Shane Crawford and Rachel Williams as ambassadors.

“We expect to raise more than $30,000 to support the ongoing efforts of the organisation, which is really exciting,” Chris says.

“From day one we have been so overwhelmed by the support of people who understand our desire to give Jack and other children with disabilities the opportunity to be included in activities that many of us take for granted.”

“To see the smiles on the faces of the kids taking part in the Launceston Ten in the Just Like Jack running chairs, and hear the cheers of support from the crowds as we ran past was exhilarating.

“We have lots of exciting plans for the future of Just Like Jack and the special group of people who are now a part of our lives as we keep breaking down barriers for people like Jack.”

Chris Duffy with son, Jack.

Both Chris and Frank are extremely humble about what they are achieving for people with special needs.

Perhaps the best person to sum it up is Source Kids founder Emma Price, who is involved in both of their lives. Emma's daughter Charlotte has Angelman syndrome and she is one of the Just Like Jack team.

“Both Chris and Frank are so selfless. They are perfect examples of the great dads in the special needs community who go above and beyond to fight for their children and others in similar situations,” Emma says.

“They make this world a little bit of a better place for all of us.”

“Early on we did a few fundraising activities to raise funds for special needs organisations that supported Jack and we have been extremely lucky to have developed the support networks we now have in place but we quickly realised others aren't so lucky.”

The Duffys have recently established the Just Like Jack organisation and have gathered sponsorship and support to buy another five running chairs to help other special needs children like Jack experience the thrill of taking part in events.

The first outing was the Launceston Ten in June 2017. During this event six children with disabilities completed a 10km fun run thanks to their support team. The team will again tackle the Point to Pinnacle later

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SPRING 2017

17

BY RACHEL MCGREGOR

HOW DADS DEAL WITH DIAGNOSIS

WHEN YOUR CHILD IS DIAGNOSED, REACTIONS CAN RANGE FROM SHOCK AND DENIAL THROUGH TO RELIEF AND A SENSE OF GRATITUDE THAT THERE IS AN ANSWER. There will also, usually, be an element of grief. I have found that dads can feel a tremendous sense of disappointment about the loss of certain dreams and desires for their child, which they worry will be out of reach. I have met many fathers who have experienced professional and worldly success who have learned of their child's diagnosis and have had to face frustration and disappointment that their child may not be successful in the exact same way they have been. They must now discover new ways that their child can be successful and this takes them on a new journey with their child.

Sometimes dads can experience anger about their child's diagnosis. They may even be frustrated with the practitioner who gives the diagnosis and feel resentment about their child being given a 'label' as they feel their child will be limited by it or misunderstood. Sometimes they will experience guilt or a sense of blame.

For some dads, learning of their child's diagnosis brings incredible clarity as to why their child behaves, talks or responds in a particular way. In this sense, a diagnosis can bring some sense of relief. This is especially important if the diagnosis takes place several years into the child's life and

the parents have experienced years of misunderstandings. It may be like a series of jigsaw pieces clicking into place, and there can be a sense of relief about this.

Dads may respond with less overt emotion, but with deep reflection and introspection.

It can also cause them to reflect on their own experience as a child, especially if they experienced any difficulties. This can take time to process.

I have found that many dads respond to the diagnosis with a stronger focus on wanting to know the ‘solution’ and what needs to happen next. Many dads want to know facts, the information and the potential outcomes for their child. They want to know what they can do. Many dads are wonderful to work with when interventions are carried out. They like to know the steps to take and often follow through with strategies quite efficiently. They often ask good questions too! I really appreciate it when dads email me and ask direct, practical questions. They will seek clarity on things.

When mums receive a diagnosis, they may respond with more overt emotion and a strong sense of protectiveness. There can sometimes be tension at this time as the mother may wish that the father would respond in the same way. There can be a settling time where each parent will grieve and process in their own way. This needs to be respected and supported by those around the family.

The best way for mums and dads to work through this is to have open, honest conversations. They can prepare questions for their clinician and ask for information to read and process together. The most

important thing is for dads to be included the process. Often, mums are present at consultations and appointments and dads can be left to hear the summary. This is where it is important that clinicians and the parents can email outside of appointments if necessary. I really like to do home consultations where dads are present and we can all work out strategies together. Dads often have great ideas and are willing to give strategies a go.

It is important for dads to know that their child is not their diagnosis. They are, first and foremost, a child with many individual talents and traits that make them unique.

They may follow a different trajectory in life, and with new successes and goals. Dads can work through this by getting involved as much as possible with the various therapies if applicable, for example, taking their child to appointments as often as is allowable.

They could join a support group for dads of children with a disability or connect with other parents at their child's place of education. Reading and learning in their own time is also a key thing. It is also useful for dads to be given an opportunity to discuss how the diagnosis will be communicated to people in the child's life, such as siblings, extended family, school teachers and others in the community, as this is often a concern for dads.

Dads play an important role in their child's development and progress, and it is fantastic when they are included fully in the process.

Rachel McGregor AMAPS, Psychologist www.rachelmcgregor.com

If you are struggling with your child’s diagnosis and need someone to talk to please go to www.panda.org.au/info-support/how-is-dad-going for support.

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SPECIAL NEEDS TEACHER IN FOCUS

MICHAEL PEPPRELL PRINCIPAL OF BAYSIDE SPECIAL DEVELOPMENTAL SCHOOL

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HOW LONG HAVE YOU BEEN TEACHING/IN EDUCATION FOR? 28 years.

WHAT DREW YOU TO A CAREER IN EDUCATION AND, ESPECIALLY, SPECIAL NEEDS EDUCATION? For as long as I can remember, right through primary school and secondary school, I was always interested in assisting my peers to learn and succeed with set tasks.

This progressed to me undertaking work experience in a primary school and then being fortunate enough to be accepted into teachers’ college at 17 years of age.

Along the way, I had a variety of different part-time and full-time jobs during holiday breaks, in fields ranging from process work in factories, to labouring, building boat trailers and working in service stations. This further reinforced my motivation to pursue my career in teaching. The turning point with regards to special needs education came during my final teaching round when we were given the opportunity to work in a specialist school for four weeks, which included a 10-day camp to Adelaide. This was a life changing experience for me. I had the chance to work with great students and staff, and on return knew I had found my niche.

WHAT IS YOUR EDUCATION PHILOSOPHY? Teachers should always change how they do things to suit a student’s needs, learning style and preferences to ensure that the students are active participants in the learning program. Learning is most effective when it is purposeful and engaging.

HOW HAS BEING THE FATHER OF A CHILD WITH A DISABILITY CHANGED/INFLUENCED THIS?

WHAT ROLE DO YOU SEE FATHERS PLAYING IN THEIR CHILDREN’S SCHOOLING?

My son is 17 years old and has a diagnosis of autism in addition to a rare metabolic disorder known as isovaleric academia or IVA. Our family’s journey with him has helped me to prioritise what really makes a difference for us. Safety, opportunity, connection and understanding have been very important factors in his schooling to this point. I believe that these factors are prevalent in assisting me every day.

Currently at our school, we have an increasing number of dads who are equal partners and even primary caregivers in their child’s schooling. The advantages of this, outside of the importance of sharing the load, are consistency in care and educational opportunities and a contributing parent perspective and insight.

HOW IMPORTANT DO YOU THINK IT IS FOR THERE TO BE MALE ROLE MODELS WITHIN THE SCHOOL ENVIRONMENT? I think the more variance of persons within the school environment, the more enriching the experience for the students.

This includes gender, culture, religion and age. For many of our students, a female or several female influences as their primary caregivers often exclusively dominate their life experiences. Having a balance of male role models is a vital and healthy developmental opportunity.

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WHAT DO YOU FEEL IT IS IMPORTANT FOR THEM TO KNOW? Encourage and celebrate your child’s personality and achievements. Let them have many opportunities to have choices.

Be proud of your child. Love them unconditionally.

WHAT’S YOUR FAVOURITE PART OF YOUR JOB? Sharing and celebrating opportunities and achievements with the students.

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COOPER'S TRAVELS Cooper Smith is 12 years old and a keen traveller and foodie. Cooper uses a manual wheelchair while he travels as he has dystonic quadriplegia cerebral palsy.

because when he was born his brain got hurt.

Cooper usually writes a column about his food and travelling adventures but this issue he has invited his sister, Pepper, to write about what it’s like to have a sibling with special needs.

• He is a nice big brother.

Siblings Say …

Hi, my name is Pepper and I have two brothers.

Woody is five and Cooper is 12. I am eight.

We like to play games together and laugh and most of all we love travelling all together.

Cooper has a disability called cerebral palsy and the way I would describe it is that Cooper walks and moves differently and it is

I am going to tell you some of the good things about having a brother with a disability: • He makes me laugh.

• He helps me on Minecraft.

•W e get to go through first at the airport - it is fun!

•A t school, we all get to see each other and Woody comes across to the big side to give both Cooper and I a big hug.

•A t home, we like to play in the gym together and do exercise – Cooper has a physio and works very hard.

•W e all like to play music with Dad in his studio and Cooper uses his iPad to make music while Woody and I use the instruments.

•C ooper likes to play Minecraft and he also likes to talk about war and history and he brings up lots of meetings for our family.

Now I am going to tell you some of the hard things...

• I sometimes find it hard to understand Cooper and he gets angry and frustrated with me.

• Sometimes he gets all the attention.

I like to tell people that Cooper is very smart and teach them about disability. I am always first to help translate if someone finds Cooper’s voice tricky to understand.

You should always say the person’s name first before the disability, like Cooper has cerebral palsy, as he is a person first.

YOU CAN SEE MORE OF COOPER’S ADVENTURES ON INSTAGRAM @THEWHEELFOODIE

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ALTERNATIVE REHABILITATION

BY MARIE-LOUISE WILLIS

Suit Up! We all want our children to get the most out of their therapy sessions, school and feel comfortable in their space. But sometimes, despite all the will (and/or bribery) in the world, their bodies just can’t manage to overcome the challenges they are facing.

This is where using suit therapy could assist them to reach their goals. So, what is suit therapy? Debbie Evans from Therapies for Kids says: “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.

“The less invasive suits are often enough to give most children the confidence and manual support to allow the acquisition of more complex motor skills. If suits are used as an exoskeleton they can be used to get the appropriate upright alignment for children with severe neurological disorders.”

Suit therapy encompasses a wide range of products, with a number of different strategies and philosophies for use.

They include ready-made compression clothing, made-to-measure suits, including suits with panels that assist the specific areas of weakness that you would like to target, suits that are used

only within a therapy session under the direct supervision of the therapist and suits that are used at home. There are centres offering tailormade intensive therapy programs using suits and you can even use splints or tape if an actual suit isn’t your thing.

TAPING Kinesiotape is a hypoallergenic, latex free, lightweight, elastic, therapeutic tape. It can be used to improve core strength and alignment (especially with children with low core muscle tone), reduce in-toeing, treat torticollis, reduce neck and back pain, and provide knee support as well as many other applications. You can also combine Kinesiotape with other treatment techniques.

It is used to:

Restorative Medical Splints Prevent– Protect—Restore Designed for Children with Neurological Tone

• Reduce the activity muscles (when muscles are overactive or working too hard) • Increase the activity of muscles (when muscles are underactive or weak) • Support joints to maintain or improve stability and alignment • Reduce pain • Reduce swelling, bruising or inflammation • Increase circulation, which may increase healing • Improve flexibility in soft tissue including scar tissue The tape can be left on for several days. It is waterproof so you can shower or bathe with it on. The tape has holes to allow air circulation. It is not a restrictive tape like traditional sports tape, so it is very comfortable on and it allows children to move within it.

Easy to fit

WHAT THINGS DO YOU NEED TO CONSIDER?

Comfortable to wear

• Skin integrity and reactivity.

Washable and mouldable

• How much effort it takes? It is only tape after all. A child may need a directional therapy garment instead.

Treat: Elbows, Knees, Hands and Feet

• How long your child is likely to need to tape for? Clients need to come in every one-to-two weeks, which can become expensive if the clients are self-funding their therapy sessions. In some instances, I have been able to teach parents very simple applications, but the majority of clients need me to tape them.

Sizes: Infant to Adult

• Whether the child is likely to pull it off? Even though the tape is effective, sometimes it is not worth the effort as the child will pull it off by the end of the day or the next day.

WHAT KINDS OF RESULTS CAN YOU EXPECT?

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I have seen dramatic changes in alignment and skills but mostly it is about improving quality of alignment and movement and gradually changing movement patterns. I did have a child with low muscle tone take his first steps within two weeks of first starting taping.

Taping information provided by Tiffany Chan, Super Kids Therapy tiffany@superkidstherapy.com.au

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ORTHOTIC GARMENT SYSTEMS These are dynamic orthotic suits designed to provide sensorimotor input and improve postural alignment and stability, while allowing active movement skill training.

They are used along with physiotherapy to treat low muscle tone, decreased core strength and poor trunk control, as well as correcting flexible scoliosis, excessive hip rotation and knee hyperextension. They are used within the clinical setting for therapy and are designed to be worn at home under clothing as well.

Look for: DMO, Mollii suit, Second Skins, SDO, Spiral Skins, TheraTogs.

COMPRESSION GARMENTS Compression clothing provides proprioceptive feedback and a calming sensory experience ideal for children with sensory processing disorders, ASDs and/or ADHD. The snug fit of the clothing can enable children to focus, learn and self-moderate behaviour. It can also provide support for children with low tone – assisting with the elimination of some repetitive behaviours. Compression clothing can also be worn as underwear – and can assist children discretely under school uniforms for example. It is designed to be worn all the time.

Look for: Calm Care, Calming Clothing for Kids, Calming Kids Australia, JettProof, SPIO.

INTENSIVE TRAINING SYSTEMS Physios and OTs trained in this method work with your child for three hours a day, five days a week for three weeks in an individualised program designed to correct and teach your child new patterns of movement through strengthening and functional skills practice.

The intensive suit therapy programs are designed for those looking to meet functional goals at an accelerated rate as compared to traditional therapy.

Look for: Napa Centre, NeuroSuit, TheraSuit.

SPLINTS Splints or braces can be used to stretch muscles, to keep the targeted body part in a more functional position, and to providing sensory input. They are also helpful to create resistance.

Look for: DME, Second Skin.

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WHAT YOU NEED TO CONSIDER WHEN SELECTING SUITS

• Potential contra-indications:

Debbie Evans from Therapies for Kids suggests you consider:

• The correct amount of support the child requires – less is definitely better as suits that function as exoskeletons do limit some normal movement i.e. rotation, that is essential for the acquisition of complex movements.

• The child’s functional skills and goals. Some suits may only be designed for that child for acquiring standing.

• The muscle length and joint stability of your child.

• Dislocated joints if using suits that have strong pull.

• Family preference for suits used at home as some suits can be fiddly to put on.

• Most suits make toileting more difficult.

• Climate.

• Some suits only useful during therapy.

THE BENEFITS OF SUIT THERAPY: • Intensity by taking therapists hands home (for suits that are purchased and taken home).

• Increased proprioception.

• Correct alignment particularly for structural postural disorders.

• Regulation for children with sensory processing disorders.

WHAT KIND OF RESULTS CAN YOU EXPECT? This will depend on what you are using the suit for and your child’s goals. Sometimes results are seen immediately i.e. improved posture, decreased uncontrolled movements, less hypersensitivity to the environment. Other times longer changes are seen after weeks of continual use i.e. when used for hypermobility and low tone such as in-toeing and lower limb instability.

The SDO® provides and improves:

STAND UP. STRIDE FORWARD. THRIVE ON.

- Sensory and proprioceptive feedback - Musculoskeletal support and alignment - Postural control and stability - Quality of movement - Functional abilities Recommended for children and adults living with neurological conditions, abnormal muscle tone, joint instability and sensory deficits.

Sensory Dynamic Orthosis (SDO®) by TechSkin® is a made to measure dynamic compression garment.

E thrive@wellandable.com.au M 0413 295 534 W www.wellandable.com.au

Designed with reinforcement panels to meet individual needs.

Customised dynamic splints • Second Skin Dynamic Splints are a world first innovation for children with neurological conditions.

• Our therapy team prescribe custom-made body and limb splints to target a wide range of medical, therapy, client and family goals.

• Conducting regular clinics around Australia, New Zealand, United Kingdom and Ireland.

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• Second Skin is a NDIS approved provider.

SYDNEY - P: +61 2 9386 0812 E:sydney@secondskin.com.au

BRISBANE - P: +61 7 3084 4319 E: brisbane@secondskin.com.au

www.sourcekids.com.au

Debbie’s

top

5

THINGS TO REMEMBER WHEN THINKING ABOUT INVESTING IN A SUIT:

are most beneficial to use to take 1 Suits your therapists hands home with you. are many options and reasons to 2 There use a suit but not one suit fits all or is of use to every child.

3

Look for suits that allow you to have intensity daily.

sure you consider ease of use when 4 Make choosing a suit – because a suit that gets

worn often is better than one sitting in the cupboard.

suits should be prescribed in 5 All conjunction with your therapist looking Debbie Evans, Therapies for Kids www.therapiesforkids.com.au

at your child’s goals. Suits should be individually fitted for your child by the manufacturer or by your therapist.

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Calming Clothing for Kids has developed a discreet compression garment for children suffering from Sensory Processing Disorders such as those experienced by children with ASD.

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

Recommended by occupational therapists internationally and Australia wide! www.calmingclothingforkids.com calmingclothing@gmail.com

DM Orthotics is a world leading designer and manufacturer of medical orthoses designed for the management of neurological and musculoskeletal conditions.

The DMO suit is designed to align the shoulders, torso and hips - improving symmetry and assisting in stabilisation of the body and spine. The DMO Suit is custom made and individualised for the wearer, constructed from strategically placed compression and reinforcement panelling which provide an optimum level of support to aid proximal stability and positively effect muscle tone.

Korthotics P/L (Australian Distributor of DMO) Ph: (02) 8710 4183 Fax: (02) 8572 9914 Email: enquiries@korthotics.com.au

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ADVERTORIAL

A DYNAMIC

EXPERIENCE NAPA opened in Los Angeles, California in 2008, and has grown to be one of the world’s best and most respected clinics for paediatric disability intensive therapy.

NAPA began its travelling clinics in 2011 and at the beginning of 2016, the NAPA Centre in Sydney was established. NAPA’s mission is to be the best centre providing children and young people with disabilities cutting-edge treatments and all therapies, all under one roof. It also has one of the most established records using Suit in therapy programs.

Clare MacFarlane, NAPA Director of Therapy says, “Our programs are different because they focus on the child as a whole person, working on their physical, sensory, communication and mental challenges, in a fun, motivating, supportive and positive environment.”

THERE IS THE THERAPY AND THEN THERE ARE THE THERAPISTS NAPA’s multi-disciplinary team of specialised paediatric physiotherapists, occupational therapists and speech therapists are highly educated, highly trained, energetic, fit, and like to think outside the box.“Programs are individually tailored, innovative, and have a multi-disciplinary approach around each child’s specific needs and goals. This ensures that the therapies used reach their maximum potential.”

THE INTENSIVE DIFFERENCE The three-week intensive program (IMOT) is based on strengthening, conditioning, repetition, decreasing unwanted reflexes, and teaching new improved motor and oral patterns through repetition and correct alignment.

Ali Gebhardt, occupational therapist at NAPA says, “At NAPA, we draw from lots of therapy styles, as it’s highly unlikely to be as effective or successful if it is only a one-method approach. We look at the child not only from a physical perspective, but also from a sensory, emotional and communication perspective. We can’t help a child learn to walk if they hate putting their feet on the ground or their balance is not great”

IS MY CHILD A CANDIDATE FOR INTENSIVE THERAPY? NAPA Centre offers expert therapy services for children with a broad range of developmental disorders including cerebral palsy (and conditions that mirror CP), ASDs, genetic conditions, acquired brain injuries, developmental delays, spinal injuries, speech or language disorders, feeding & swallowing difficulties, sensory issues, undiagnosed delays, and more.

The age range of the children that NAPA sees is from about 10 months – young adults.

Typically, intensives are recommended from about 18 months of age. Each child’s program is constantly updated to suit them as they get bigger or develop more skills.

“Some children we work with just need small corrections to their gait and walking patterns, through to others with very complex conditions, who rely a full multidiscipline team approach to help them make some significant changes.” says Clare. “We also work closely with podiatrists, equipment suppliers and other specialists such as chiropractors to ensure the kids get the best intervention and set them up for success.”

TRACKING THE CHANGES NAPA recently partnered up with Bond University’s Doctors of Physiotherapy program to track the changes made by over

30 children over a three-week intensive therapy program. The goals were jointly set by the NAPA therapy team, the parents, and the Bond University team, and were deliberately made to be difficult and high reaching. The independent data showed that every child not only achieved their goals but mostly surpassed them.

FAMILY UNDERSTANDING NAPA is unique, as it has been established, and is still run, by families with children with a disability. This is why NAPA focuses on families as a whole, supporting each other on their journey through the disability world.

NAPA Clinic Manager, Louise, is also mum to Georgia, who has quadriplegic cerebral palsy. As such, she understands how significantly disability can affect a family and what is needed to make a real difference to their prognosis. She passionately believes in what the NAPA model stands for and has witnessesed just how effective and lifechanging it is for children and their families, including her own.

“I regularly watch children defy the odds and surpass their predictions. I also share parents’ pain and sorrow, laugh about some of the crazy things life throws at us, and completely understand their world! I love that NAPA families and the NAPA therapists are so supportive of each other. This really is the NAPA magic”.

Postscipt: We are thrilled to announce that both the NAPA team, and Clare MacFarlane, have been announced as finalists for “Team Excellence and Individual Distinction" in the upcoming National HESTA Health Awards.

NAPA CENTRE OFFERS EXPERT THERAPY SERVICES FOR CHILDREN WITH A BROAD RANGE OF DEVELOPMENTAL DISORDERS

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www.sourcekids.com.au

ADVERTORIAL

INTENSIVE THERAPY...

INTENSE RESULTS. Intensive therapy programs that work, are fun, are motivating, and that make real, tangible and lasting changes to every child with their own unique and specific needs.

This is the NAPA difference.

A holistic, innovative and co-ordinated approach, using progressive therapy techniques, and an excellent paediatric therapy team with a ‘can-do’ attitude, working together under one roof to help guide each child to discover and develop new skills, grow in confidence and be set for success.

It's intensive, and it works.

NAPA offers under one roof: • Physiotherapy • Occupational Therapy • Speech Therapy • Intensive Therapy (IMOT) 3-week programs • Weekly therapy programs • Early Intervention Services • NeuroSuit Therapy • Sensory Integration • MEDEK Exercise (CME) • UGUL/Spider Cage Therapy • Treadmill Gait Training • PROMPT Therapy • Hanen Speech technique • VitalStim/Swallowing Therapy • Developmental Feeding Services • SOS Feeding Therapy • The Listening Program • ACC Services • Conductive Education NAPA is a NDIS approved provider. BetterStart, HCWA, FaHCSIA, Medicare and HICAPS funding accepted.

Please contact us for details.

Bookings for NAPA’s 2018 Intensive Programs are now open.

Register via the website www.napacentre.com.au NAPA Centre Level 3, 2 Lincoln Street Lane Cove West Sydney 2066 Ph: 02 9420 5080 Email: info@napacentre.com.au www.napacentre.com.au Follow NAPA Center on Facebook and Instagram NAPA CENTRE AUSTRALIA, Sydney NAPA CENTER USA, Los Angeles, and Boston opening April 2018!

Pop-up clinics coming to Perth and Hong Kong in 2018.

CONTACT US TODAY AND SEE THE DIFFERENCE.

Therapies for Kids

- Advertorial -

Contact us : 9519 0966

37 Nelson St, Annandale www.therapiesforkids.com.au

Therapies for Kids Intensives : We offer a unique, innovative and effective Intensive Therapy Program for infants through to adolescents with neuromuscular disorders and a variety of diagnoses. This program will challenge your child, helping them to maximise gains in strength and function in a short period of time. Our holistic approach focuses on developing functional motor skills and enhancing development of independence.

Tools & techniques used during a typical day include: • Theratogs™ - soft dynamic proprioceptive orthoses • GoBabyGo Harness System • Universal Exercise Unit / Spider Cage - results in balance control in partial supported weight bearing • Distal Balance Exercises (DBE) • Neuro-developmental principles • Functional skills development

What are Theratogs?

• Are a live-in outer skeleton – allowing postural, sensory & neuromotor training.

• Are individually fitted for each child and adapted over time by the therapist as the child adjusts to the Theratogs.

• Are designed to decrease the overworking of muscles allowing weaker muscles to work.

• Designed to allow more coordinated movement reactions.

How they work: • Theratogs provide continuous feedback to the brain to help create new improved patterns of movement.

• Theratogs strapping emulates therapist’s hands allowing for personalised treatment.

• Theratogs allow the child to perform skills more fluently and with less effort.

• Theratogs are designed so that once a child is in a more stable posture they are able to be involved in more functional tasks.

• Theratogs allow massed practice of motor skills.

• Wearing the Theratogs garment all the time increases the intensity of treatment.

Contact us : 0434 853 145

Email : info@milestonestherapy.com.au Web : www.milestonestherapy.com.au

Milestones Therapy Pty Ltd. are the Australian supplier of a range of Therapeutic products and Therapy Courses with a strong paediatric focus. Our product range focuses on products which are wearable, encourage carryover, and allow kids to go about their day, whilst moving in great alignment, and practising perfect.

Products Supplied: TheraTogs, SPIO, Cascade Orthotics, Bamboo Elbow Brace, McKie Thumb Splints, Kinesiotape, Hip Helpers, Benik Hand Splints, Fabrifoam, Happy Strap, Wingman Harness, Books and Clinical resources, Paediatric Therapy Courses.

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Tiffany Chan – physiotherapist with 18 years’ experience in paediatrics

Brisbane’s only exclusively child focused Podiatry Clinic and Shoe Shop

• flat feet • hypermobility • toe walking • delayed gross motor skills • tripping & falling • intoeing • gait assessment and much more

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Our purpose at JettProof is to improve the daily lives of children and adults living with sensory needs by providing an all day wearable, effective solution.

JettProof has the ability to positively transform the lives of children and adults living with Autism, Sensory Processing Disorder, ADHD and Anxiety.

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Ph 3378 5935 – 6/2069 Moggill Rd, KenMoRe (Parking in Princeton St)

Personal experience with special needs children Cloth Nappy Doctor assistance with over 20 years combined experience with babies, children and older children.

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Maximise your child’s physical potential Experienced physiotherapists of children with mobility issues, developmental delay or musculoskeletal and orthopaedic conditions.

We focus on family centred practice and use common sense and empathy when caring for our clients.

Collaborative goal setting is an integral part of our service.

• Fully equipped rooms and gym • One on one sessions • Orthotic and equipment prescription • Gym circuit after school and Saturday mornings • Co-ordinated kid classes • Yoga and relaxation • Home and childcare visits

• Coorparoo • Parkwood • Albany Creek • Highgate Hill

Brisbane (07) 3324 2490 • Gold Coast (07) 5594 7014 www.movementsolutions.com.au

www.sourcekids.com.au

SPRING 2017

35

SENSORY

BY MARIE-LOUISE WILLIS

gardens

CREATING A BEAUTIFUL SENSORY GARDEN IN YOUR BACKYARD IS A DOABLE ACTIVITY – EVEN FOR THE NON-GREEN THUMBED AMONGST US!

THINGS TO THINK ABOUT BEFORE YOU START: WHAT ARE YOU AIMING TO ACHIEVE WITH YOUR GARDEN? Is your child a sensory seeker or sensory avoidant? If you are unsure, it may be worth chatting to an OT about this. You may choose to create a garden that suits one of those sensory profiles entirely – or choose to have zones that gently stimulate the senses, and others that are more calming.

WHERE YOU LIVE It just makes sense to plant a garden that will grow well in the climate you live in. It is also worth thinking about orientation of the garden (if you get morning sun for example) and the type of soil you have. Consider chatting to a landscaper or gardening buddy about this if you are unsure.

While you can be overawed (and overwhelmed) by the incredible Pinterest projects by talented landscapers and the super-crafty, it is important to remember that the real goal of a sensory garden is to provide a space that your entire family can enjoy together while providing the sensory input your child requires.

Sensory gardens can be very therapeutic for children with sensory processing disorders, ASDs, traumatic brain injuries and more.

They also provide a rich sensory diet for all of us and are a wonderful way to connect, outdoors, with the whole family.

Now, if your gardening technique is more the patch of lawn with a weed or two along the borders variety, or even a deck or balcony with a token pot plant: never fear. You don’t need a lot of space or gardening nous to create a useful and enjoyable sensory space.

We have plenty of tips and ideas to help you create the ideal sensory garden for your family using the space and budget you have!

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YOUR BUDGET, SPACE AND THE TIME YOU HAVE This can be a massive full-scale event with vegetable beds, water features, pathways and hidey nooks surrounded by bamboo, with a hammock swaying gently in the dappled sunlight – or – some pots on a deck with windchimes and a swing. It’s your call.

HOW YOU LIKE TO RELAX If it feels like hard work, it probably won’t be your first place to choose to be. Consider what your family likes to do and focus on creating spaces where you can enjoy the garden together. If you are a family who likes a project and keeping busy, big beds and lots of active space is great. If you prefer to read and/or be quiet to relax, a hammock with low maintenance plantings may be more your style.

HOW TO MAKE IT APPEALING TO ALL YOUR CHILDREN It can be challenging to encourage children

away from their technology but the idea is to create a space that allows them to enjoy the outdoors together. Consider including practical projects they can get involved with and learn from (such as having their own garden bed to tend to), a space for imaginative play – and even to create their own cubby or den, and the opportunity for more physical play (something to climb or swing on for example).

YOUR CHILD’S DISABILITY AND THEIR LIMITATIONS AND STRENGTHS If your child is in a wheelchair or finds transitioning difficult, make sure you have a wide path with level surfaces and plenty of turning room so that they can use the space with ease.

YOUR CHILD’S HEIGHT If they are in a wheelchair, the garden beds may need to be raised so they can access the plants with ease and are able to touch them, smell them, taste them… and even care for them.

WHAT NOT TO PLANT Go to www.kidsafensw.org for a full list (including images) of the plants you don’t want in your garden.

THE SENSES The beauty of a garden is that so many plants are an all-in-one sensory experience.

You can mix and match to create a sound, taste, touch, sight and smell montage ideal for your child’s sensory development. If you have already decided that lots of plants aren’t your thing, there are also plenty of other organic and man-made options you can include.

www.sourcekids.com.au

Explore touch, taste, sound, smell, and sight, as well as the vestibular and proprioceptive systems, to create a sensory garden that works effectively for your child and is a delight for your entire family to enjoy.

FOR MORE INFORMATION AND IDEAS CHECK OUT THESE GREAT E-BOOKS

WE LOVE

TOUCH: Try to include plants that have different and interesting textures such as prickly, velvety, smooth, soft and spiky.

Plants to think about: lamb’s ear, violets, geraniums, roses (careful of thorns), and rosemary. Organic matter such as bark, mulch, pebbles, soil and wood can be effective too.

TASTE: Grow an edible garden! You could include fruit, veggies, herbs and even edible flowers like nasturtiums. This is also a wonderful opportunity to think about including bush tucker and learning about our indigenous plants and foods.

SOUND: Ornamental grasses and bamboo create soothing sounds in the wind. Windchimes, bells and water features are calming. If you plant natives you are certain to attract birds and fill your garden with their calls, chirps and song.

SMELL: Choose the smell of plants you enjoy. Calming scents like lavender work well for the chill-out zones and invigorating scents like lime and mint are perfect for the more active areas. Consider using a mixture of plants that release their scent naturally (like jasmine or gardenia) and those that need their leaves or petals to be crushed first (like geraniums). Some plants have a subtle aroma while others are much more intense. Consider this when planting to create sensory interest. Plants to think about: honeysuckle, mint, basil, lavender, citrus, rosemary.

SIGHT: Colour is so important when creating visual stimulation.

It is important to consider your planting to avoid over stimulation in restful areas and vice versa. Create visually interesting areas with grouping or layering of colour.

Include mobiles to reflect the light. Windmills, water features and pathways also create visual interest.

VESTIBULAR: You can add balance beams, swings, hammocks, a hopscotch court, and/or anything to climb.

PROPRIOCEPTION: Include the availability of activities like having a wheelbarrow to push, leaves to rake, dirt to push hands into, or a watering can to carry and water the plants with.

You could also have a trampoline.

DESIGN PRINCIPLES FOR CREATING THERAPEUTIC GARDENS FOR CHILDREN WITH AUTISM SPECTRUM DISORDER

By Therapeutic Gardens Australia

RRP $25.00 Design Principles for Creating Therapeutic Gardens for Children with Autism Spectrum Disorder is a thoroughly researched e-book developed specifically for individuals wanting to improve the health outcomes and quality of life for children with ASD. The book takes a scientifically based, holistic approach to creating unique outdoor spaces that cater to the needs of special children. Jam-packed with design principles, as well as practical tips for implementing your design successfully, this e-book is an accessibly written summary of the latest evidence highlighting the wonderful benefits to be gained through interacting with nature.

Find this book at therapeuticgardens.com.au (click on resources in menu).

WE LOVE SCENTED PLANTS

By John Mason Published by ACS Distance Education

BUILD YOUR OWN SENSORY PATH!

G

IF YOU’RE FEELIN

CRAFTY:

CREATE A MOSAIC OR PEBBLE ART PATH. Sketch out the pattern you would like and create on a massive scale. This is a great project to tackle with your children!

www.sourcekids.com.au

Divide your path into different sections to fill with different sensory materials.

They could include: Camomile lawn, which releases a lovely scent when you crush it so it smells wonderful when you walk on it. It is soft underfoot and doesn’t require mowing, so it makes it ideal for small sections in the path. Pebbles – you could try loose, smooth pebbles in one section and pebbles cemented in, in another. Bark.

Logs – try one section horizontally, the other vertically, for two different texture experiences.

RRP $21.95 The Scented Plants e-book is a wonderful guide for anyone who would like to include plants in the garden that delights the senses. Plants can not only be visually pleasing, they can also fill your senses by providing wonderful scents and smells.

Get to know which plants would be a great choice if you want to include scented plants in your garden. It includes growing scented plants, climbers and shrubs, foliage, roses, citrus scented plants, lavender, ginger and scented trees.

Download your free copy from www. acsbookshop.com (search ‘Scented Plants’).

Use promo code SKscentedplants (offer expires 30/12/2017).

SPRING 2017

37

n e d r a g OUTDOOR PLAY

HOW DOES YOUR

? grow

SUNHAT BY STUCK ON YOU Perfect for keeping your child’s head, neck and face safe from the sun whilst in the garden. It’s personalised, machine washable and has an adjustable toggle to keep secure.

RRP $29.95 www.stuckonyou.com.au

CONNECTA BALANCE PATH BY HART SPORT Walk the bridges and steppingstones to explore new pathways.

MOONLIGHT WAVES WINDCHIME

BY TIMEPIECES AUSTRALIA

RRP $149 www.hartsport.com.au

Light reflects off the disks, like beams of moonlight off the ocean’s surface, while the gentle music of the disks sounds like waves lapping on the shore. What a masterpiece for your sensory garden.

RRP $76 www.timepiecesaustralia.com.au

ALL AROUND PLAYTIME PATIO WITH CANOPY BY STEP2 Host a backyard party with this beauty! An open playhouse with canopy enables wheelchair users to entertain for hours on end.

RRP $499 www.fishpond.com.au

GROW GRASS HAIR KIT – KOALA BY MR FOTHERGILL’S This kit contains everything you will need to grow funky hair. Tie it up or give it a clip when it gets too long.

RRP $4.95 www.mrfothergills.com.au 38

SPRING 2017

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DESIGN YOUR OWN BIRD’S HOUSE BY SEEDLING Paint or decorate your own birdhouse. This kit is recommended for ages 4+.

RRP $29.99 www.seedling.com

GARDEN TOOLS STARTER SET BY TWIGZ A little gardening enthusiast will get lots of use from this kit containing tools, gloves and steel buckets.

RRP $99.95 www.kesco.com.au

WATER GARDEN BY BACK TO THE ROOTS A self-cleaning fish tank that also grows organic sprouts and herbs! Low maintenance and perfect for indoors or the classroom.

RRP $99.99 www.backtotheroots.com

ACTIVE WORLD TRAY AND STAND

BY MODERN TEACHING AIDS With interchangeable heights, this tray and stand is great for wet or messy play, and would be excellent for growing herbs and creating natural environments.

This lightweight, easy to clean octagon encourages group play and interaction.

RRP $199.96 www.teaching.com.au

HERB PATCH KIT FOR KIDS

BY PLANET ECO Teaching kids to garden is fun and easy with this herb kit. Designed for children over three, they contain all that’s needed to start growing food.

RRP $25.95 www.planet-eco.com.au

PLUM® CLIMBING PYRAMID PLAY CENTRE BY SPECIAL NEEDS PLAY EQUIPMENT Looking for a playground that’s got lots of climbing, swinging and imagination? Look no further – this playground is perfect! Made from FSC certified timber, this strong and sturdy play centre is great for any Australian backyard.

RRP $999.95 www.specialneedsplayequipment.com.au www.sourcekids.com.au

SPRING 2017

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MEDICALERT PROTECTION. COVERED IN YOUR NDIS PLAN.

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MedicAlert® and NDIS make ‘Safe Return’ program accessible for all Travelling with children is daunting enough. But for Sharon Jackson, a trip with her four children – three of whom have autism - took that fear to the next level.

“We live in a small rural town, so if one of my children runs away I know they’re safe. But not when we’re away.”

That’s why Sharon organised MedicAlert sports bands for her family before the trip.

MedicAlert IDs provide full support in an emergency – including access to a 24 hour Safe Return service.

“MedicAlert IDs inform first responders of conditions like autism, ensuring the child receives appropriate care and is quickly and safely returned to loved ones,” said MedicAlert Chief Executive Heidi Jones.

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SPRING 2017

www.sourcekids.com.au

It’s the start of daylight savin Time to change your smoke alarm batteries

Building or renovating?

Don’t forget what’s important.

Keeping your family safe.

Quell has a wide range of fire safety products that will help keep your new home and more importantly, your family, safe.

Visit quell.com.au to find out more.

Quell® is a registered trademark of Chubb Fire & Security Pty Ltd

BY MARIE-LOUISE WILLIS

HOME DESIGN

TIPS FOR DESIGNING

the perfect home

WHEN FUNCTIONALITY IS THE MOST IMPORTANT ASPECT OF YOUR HOME DESIGN, IT CAN FEEL LIKE STYLE HAS TO BE THE COMPROMISE. NOT ANYMORE. Home modifications have come of age and designers are aware of the importance of families being able to create the warm, contemporary family home they would love to live in – while still providing the necessary modifications to make sure that home care and accessibility works effectively.

Building a home, or even extensively modifying one, can be a stressful exercise when all you have to think about is paint colours and flooring options. When you have the added responsibility of making sure it works for your child with a disability – now and into the future – it just makes sense to make sure you have an architect and an OT assist you with your project. To get you started – and for some inspiration – we’ve chatted to experts in the modified home field for tips and ideas on how you can create a practical, useful, easy to live in space that still maintains your family’s personality and style.

TIPS FROM AN OT Occupational therapists understand health conditions and disabilities, how children may present over time, and how this affects their equipment and care needs. They have knowledge regarding the effectiveness of alternative products and design solutions, the skills to assist with choosing the right products and planning the space and layout of the home.

OCCUPATIONAL THERAPISTS CAN ALSO: •D iscuss any of the problems being encountered when using the home environment.

• Research product and design options.

•P rovide details about local builders, electricians, plumbers, draftspersons, and architects who have experience doing home modification work.

•D evelop concept drawings for larger works to be used by building and design professionals.

•D iscuss how tasks could be completed differently as a possible alternative to a home modification.

•R ecommend equipment as an alternative to a home modification.

•A dvise on local home modification funding options.

OTs have different knowledge and skills to a builder or architect, who may not be trained or have knowledge in the above areas. The occupational therapist complements design and construction professionals by bringing the above information to the planning process.

SOME TIPS FOR FAMILIES Contact an OT early when thinking about changes needed to the home (even if equipment has not been acquired) to enable

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timely gathering of information and problem solving.

Remember to mention the needs of others in the home as the OT should have some good design or modification ideas to suit a range of people, including carers who may have to lift and handle children.

Consider talking to the OT about the different approaches that can be taken over time to meet your changing needs and your finances. Options such as a staged approach, where modifications are done gradually over time; using adjustable product that suits a range of users in the home; or full modifications to ‘future proof’ the home can all be worked through.

Talk to the OT about the problems being encountered in and around the home rather than taking the DIY approach. You may feel that you need minor modification but in fact you may have complex housing circumstances (for example, the environment will not support the installation of the home modifications, landlords may object to the installation of the home modification etc.). An OT may be able to suggest a specific solution to address a child’s need, that is tailored, cost effective and safe.

Ask the OT to show you their photos of home modifications completed for children in the same or similar circumstances.

Check with the OT about equipment and technology options that may have been paired with the home modification to achieve a great outcome for other families.

Ask the OT about finance options as he/she may know some funding sources to assist with your home modification or new home design.

Liz Ainsworth, Occupational Therapist and Access Consultant at Home Design for Living www.homedesignforliving.com

www.sourcekids.com.au

TIPS FROM THE ARCHITECTS Things to remember when designing a home modification: Each home modification is different depending on the needs of the child/person, their family and the layout of the home.

Typically, a home modification may involve improved access to and within the home.

The use of assistive technology is also transforming accessible homes, with communication technology, lighting, motion sensors, security and temperature control applications enabling children to have greater control over their environment.

It is important to consider: • The child’s need to learn to become independent.

• The child’s need for play as an occupational activity.

• The need for the design solution to accommodate physical growth. This will impact the selection of the size, scale and positioning of equipment, fittings and fixtures, and require adaptable design.

Home modification design for children with disability should focus on: • Supporting the provision of opportunities that address the current and future developmental and learning needs of the child and their enjoyment of activities that are important to them.

to the child, family and carers.

• Future-proofing the design with consideration to the longer-term needs of the child and family.

• Accommodating the domestic and social needs of the whole family.

Do you recommend purely practical solutions for a home or do you believe that good design and practicality can be combined to create a beautiful living space?

Good design for children and families is both functional and beautiful. Home modification is very outcome driven, with the child’s and family needs and preferences interpreted into a design solution that will improve their day to day lives.

The home modification must consider the technical design requirements for access and mobility, for example, the correct gradient for ramps, the necessary circulation spaces and other essential features.

The home modification must also adhere to building laws and regulations, for example, the requirements for building certification, waterproofing, electrical work and the use of domestic building contracts.

However, we believe the family should not feel compromised by the design options when planning their accessible home.

• Enabling the child’s functionality and mobility.

What tips would you give somebody looking to modify a home before signing up with a service provider or contractor?

• Minimising physical and psycho-social risks

Make sure the professionals you engage at

the initial consultation and throughout the project are experienced in the design and delivery of home modifications for children and families. This includes the occupational therapist, and the building professionals including the designer, builder and project manager.

The service provider and contractors must also be aware of the requirements of funding bodies, including NDIS, as these have an impact on the scope and standard of the funded home modification.

When the time comes for contracting and construction, it is advisable to have a domestic building contract in place between the home owner and the builder.

All building work should be done in compliance with the national construction code and state-based laws and regulations, including certification of any structural work by a building surveyor.

Families may also consider the benefit of an ‘end-to-end’ service from assessment to delivery to ensure continuity of service and responsibility for the outcomes.

It is very important for the family to select service providers and consultants who they feel confident with, who will provide sound assessment and advice, and who will listen to the family to consider what they wish to achieve for their child, the changes they want to make, and how they would like things to look.

Aaron Stowe, designer and building practitioner at Architecture and Access www.architectureandaccess.com.au

AREAS TO THINK ABOUT WHEN DESIGNING/MODIFYING YOUR HOME Access:

Bathroom:

llow gently graded access and entry points to the home A and around circulation areas for ease of movement.

onsider a wet room, with no step, lip or door to the shower and C a graded floor for shower waste.

I nclude wide hallways (wider than 1 metre), doorways (850mm plus) and consider sliding doors, particularly where any mobility aids may be needed.

I f including a bath, make sure taps and fittings are not sharp edged or challenging to use.

Avoid level changes within dwellings.

Use naturally tactile floor surfaces.

Locate door handles, switches and power points at easily anticipated locations and heights.

Flow: ave a good safe floor area, without sharp edges or H complex features. onsider location of doorways that enable easy access C for wheelchair or sight impaired users. hink about linking indoor and outdoor play and living T areas via sliding doors without steps.

Kitchen and study areas:

Plan the placement of taps, so a parent or carer can assist. ituate hand basin so it can be reached from a flexible sitting or S standing position. lace items carefully so they can easily be adapted if no longer P necessary – a grab rail could become a towel rail for example. nsure temperature regulation of hot water to avoid scalding is E essential.

Fencing, property access and security: onsider easy access with a rolling front gate and open garden C with easy transition from the street, paths, car and house access. ny water features or pools need thinking through beyond A minimum legal requirement for fencing, separation and latches to suit specific needs, challenge and risk.

Think about including open areas under the sink, prep areas and desks.

Simon Tiller, Ozone Design Pty. Ltd. Architects www.ozone.com.au

Pull out drawers are easier to manage than doors.

Peter Georgiev, Archicentre Australia www.archicentreaustralia.com.au

www.sourcekids.com.au

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CASE STUDY

THE SMITH/LEEKS FAMILY TALK ABOUT THEIR HOME DESIGN

We spoke to Bron Leeks from the popular travel blog www.smithsholidayroad.com about how they have made their home work for them. Bron, Andrew and their three children, Cooper (who has cerebral palsy), Pepper, and Elwood are based in Melbourne.

DID YOU BUILD OR MODIFY AN EXISTING DESIGN?

but especially for Cooper. Cooper needed a house that could grow with him and give him every opportunity to be as independent as possible. It’s a family home that Cooper can use, be a part of and even come back to when he is older and living in his dream destination, London.

We demolished our home and built a new one. We designed it with the support of an architect and an OT for particular areas.

HOW HAS THIS CHANGED THE WAY YOU LIVE?

HOW DID COOPER’S DISABILITY INFLUENCE THE DESIGN OF YOUR HOME?

Being in this space has had a major impact on our lives. Cooper can access the bathroom independently now and use his wheelchair inside. There are no steps, so he can utilise the whole home just like the rest

HOW LONG HAVE YOU BEEN IN YOUR HOME? Since September 2016.

We built this home for our whole family

of us. The kids have their own spaces now but lots of shared space too. We have just set up a small gym space too, so Cooper can do his physiotherapy sessions at home or just hang out with friends.

HAS MODIFYING THE HOME MADE LIVING EASIER FOR YOU AND YOUR FAMILY? The house we demolished was not accessible at all and it meant a lot of lifting and carrying, and limited independence for Cooper. He couldn’t use his wheelchair inside.

Availcare stylish rails and shower seats HELPING TO PREVENT SLIPS AND FALLS IN THE BATHROOM Designed to suit your bathroom décor and give you and your children more freedom at home.

Our 25mm diameter rails are more ergonomic and comfortable for kids hands.

Ask us about options to suit you and your kids with different shapes and sizes.

Chrome or colourful options available.

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“They are so modern compared to all the other rails I’ve been shown, although the ones I’ve seen are functional they are so prehistoric in looks.”

- Helen

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For more info or to purchase visit Availcare.com.au

www.sourcekids.com.au

HAS IT MADE THE HOME MORE INCLUSIVE? The kitchen bench can now be accessed by everyone so we can prepare meals and eat dinner together. Having more space allows the kids to all play together as there is enough room for extra equipment.

WHAT DID YOU DO? All the hallways are wide, so it’s an easy turn into each room. Cooper's wardrobe has pull out drawers and our bathroom has handrails on the toilet, shower and bath.

The bathroom is screen free and a total wet room. There are no steps so everything is all

on one level, from the street to the back of the home.

WHAT ARE YOUR FAVOURITE FEATURES? The home automation system. Cooper can use his iPad to control things in the house like opening his blinds, opening the front door and opening windows. He can look on his iPad at a security camera before he lets people in!

The kids all love the hydro therapy swim spa!

WHAT WOULD YOU DO DIFFERENTLY NEXT TIME?

This was our first time building and we learnt a lot. While the actual build stuck to the time frame, all the paperwork before this took triple the amount of time we thought. Great communication with the builder is essential.

WHAT WOULD YOU ADVISE OTHERS TO TRY? Try and imagine your child as an adult.

Imagine big equipment pieces and a bigger person, then plan according to that. Put things in place just in case, like extra wall supports for hoists for example, so they’re easier to include down the track if needed.

VIP Access offers exceptional design and modification services in Queensland to improve the independence of people with disabilities in their home and workplace.

BATHROOMS - KITCHENS - RAMPS - LIFTS

Ph: 0413 830 444 QBCC: 1209552 ABN: 18 264 719 046

www.sourcekids.com.au

Email: scott@vipaccess.net.au

www.vipaccess.net.au

We also offer portable Careport units to hire or purchase to provide an immediate solution for accessible showering and toileting.

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LOOKING FOR PRODUCTS AND SERVICES NEAR YOU?

Modification

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Check out our comprehensive online directory featuring hundreds of product and service providers, and you can search for those closest to you.

ASSESSMENT DESIGN CONSTRUCTION

Creating well-designed accessible homes for young people with disability and their families for more than 30 years.

Scan for more info and brochure

Registered provider for the NDIS.

www.sourcekidsdirectory.com.au FEATURED BUSINESSES THAT APPEAR ON OUR DIRECTORY: Rothwell Physiotherapy Kids Physiotherapy www.kidsphysiotherapy.com.au 07 3204 2193 (QLD) Adapt for Kids OT and Speech Therapy www.adaptforkids.com.au 1800 085 030 (QLD)

Step Ahead Paediatrics

Aids and Equipment www.stepaheadpaediatrics.com.au 1300 953 935 (VIC)

Please call 1300 715 866 www.architectureandaccess.com.au ABN 45 159 663 582

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www.sourcekids.com.au

SAVE THE DATE

YOUR CHOICE, YOUR CONTROL 16-17 May 2018 Melbourne Showgrounds 30-31 May 2018 Claremont Showground, WA On display will be the latest in assistive technology, aids and equipment, as well as options for mobility, communication, travel services and lifestyle options.

The Independent Living Expo is an event that welcomes all those involved in ensuring better outcomes for people with disability of all ages.

www.atsaindependentlivingexpo.com.au 1300 789 845

RARE DISEASE

BY RACHEL WILLIAMS

CORNELIA DE LANGE SYNDROME Raising four children can be challenging at the best of times but being told one of your precious babies might die soon after birth could only be described as terrifying. Yet, instead of fear and resentment, there is hope and happiness to keep the Cole family from Victoria going as they deal with the challenge of raising a child with the rare Cornelia de Lange syndrome.

One in 10,000 people have the condition, which is caused by a spontaneous genetic mutation and affects a person's facial features, causes low birth weight, slow growth and medical issues including heart defects, seizures, feeding difficulties, vision problems and hearing loss.

For Andrea and Nicholas Cole, it was a shock diagnosis for their third child Bridget, who has older siblings Olivia, 14 and Samuel, six, and also a younger sister Jaime, two.

Bridget was born on November 16, 2013 after a normal pregnancy.

But mum Andrea knew immediately that something wasn't right.

“I knew the minute she was born when I looked at her face that she didn't look like my first two children but I told myself that she was just going to look different,” Andrea recalls.

“After being washed and weighed she went on to sleep for hours and hours. We couldn't wake her to feed. I remember looking at my baby and feeling sick with worry because I just knew something was wrong. I actually wondered if she had Down syndrome. I finally got the courage to call the midwife in and ask her opinion. She then told me that they had already noticed Bridget's facial features were unusual... it all moved quite quickly from there.”

Bridget was transferred to the Monash Medical Centre where she spent 19 days being tested.

“She was a sick little girl and we had no

idea what was wrong with her,” Andrea says. “She had dysmorphic facial features.

She had a very small head, which is called microcephaly. She wasn't feeding. Her oxygen saturation was low. Her limbs were twitching, so she was monitored for seizures.

They did every test you can think of but there were no answers.”

It would take months of stress and sickness – including one doctor's admission that he didn't know if she would survive – before a diagnosis was made.

“The genetics team at Monash had regular meetings to discuss certain cases and it was at one of these meetings that one of the geneticists picked up on Bridget's facial features.”

After blood tests were sent to the US it took five weeks for the results to return – Bridget, then 10 months old, was diagnosed with mild Cornelia de Lange syndrome.

At the time of diagnosis Andrea was pregnant with Jaime, so it was a relief to learn that the condition is not inherited – meaning it was unlikely the new baby would be affected.

For Bridget, the condition includes severe developmental delays.

“She also displays some autistic or selfdestructive behaviours including skin picking, biting the insides of her cheeks, eating nonfood items and she can be quite physically aggressive towards us and her siblings.”

The Coles consider themselves lucky that of the five genes involved with the syndrome, Bridget only has one affected and as a result her progress is better than it otherwise may have been.

“As Bridget grew, her airway opened up enough to allow her to feed normally, so she no longer requires tube feeding or oxygen and she no longer has sleep apnoea, which is a relief,” Andrea explains.

“Bridget is delayed in both speech and development. She struggles with communication, which is a cause of frustration for her and for us. I am going to learn keyword sign this month as we have taught her some basic signs and she is quite responsive to it.

“She has some behaviour issues. Most

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www.sourcekids.com.au

IF SHE IS SMILING AND LAUGHING AND DANCING THEN WE CAN DEAL WITH WHATEVER COMES OUR WAY. SHE IS OUR LITTLE POCKET ROCKET! of these stem from being unable to communicate properly. She is struggling with toilet training. Bridget has shown that she can learn new things but she then forgets.

“She has reflux, which causes her pain and she regurgitates quite easily. We are waiting for her to have a gastroscope so they can assess the reflux and then treat it accordingly.”

“The hardest part about being Bridget's parents is not knowing what her future holds. Also, not being able to understand her and help her when she's upset or frustrated.

Despite the ongoing health challenges and frustrations there are often moments of light – usually involving a family singalong.

“It's challenging when Bridget starts to use a new word for a few weeks but then she stops or she might learn a new skill but then that stops. We still don't know if it's because she forgets or doesn't understand. At times, she has incredible understanding and can follow instructions really well.

“As a family, we love to turn the music up loud and dance around the house,” Andrea reveals. “When Bridget has iPad time she loves to watch YouTube videos of Bollywood dancing!”

“I worry that she will struggle to make friends and learn. I worry that she is going to get left behind but I have faith in the people who work with Bridget that they will do whatever they can to help her.

Andrea says Bridget is incredibly social despite her setbacks, and takes part in kinder and day care activities.

“She is an incredibly social little girl who is known at day care for her big smiles,” Andrea says.

Whether she can attend mainstream school in the future remains to be seen – her future is somewhat of an unknown.

“As she gets older things become more obvious, some issues resolve and new issues present. We have to be prepared for anything really.

“At the moment, we are in the process of applying to get funding for an aide for fouryear-old kinder next year.

www.sourcekids.com.au

“Despite the CdLS, we love Bridget just the way she is. She is so charismatic! She loves to laugh and play. She tells me stories with lots of expression and gestures. I have no idea what she is saying but I'm sure it's really interesting! She loves cuddles and dancing and dressing up. She has so many people who have fallen in love with her. She might be tiny but her personality is giant.

“My hope is that she continues to smile. If she is smiling and laughing and dancing then we can deal with whatever comes our way.

She is our little pocket rocket!”

Turn up the music, please!

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HOW FAR WOULD YOU GO?

BY MARIE-LOUISE WILLIS

We spoke with two brave mums who had to make a decision no parent should be faced with.

Hemispherectomy is a radical operation during which one half (hemisphere) of the brain is removed or completely disconnected from the nervous system.

Children who have undergone hemispherectomy surgery will have endured many months or years of relentless epileptic seizures and suffered significant physical, cognitive, social and emotional impacts.

In almost all cases the epileptic seizures will have become life-threatening.

Hemispherectomy surgery offers the chance of a seizure free life but always comes with compromise to a child’s physical and cognitive functioning.

AT HER WORST INDI WAS HAVING 300+ SEIZURES A DAY Tammy and Scott King live in a small town called Wynyard in Tasmania with Indiana, who is eight and Jacob (18), Melika (23) and Melika's baby daughter, Hadley.

Tammy explains their family’s Hemispherectomy journey.

When Indi was just three days old, we were told she had suffered a stroke (we later found out that this occurred sometime in the third trimester) and we really didn't know what to expect after that. Life just got a whole lot busier with constant medical and therapy appointments and when she was three months old, Indi started to have seizures.

She was diagnosed with simple partial seizures, which were short, sharp seizures and she was having around 30 a day. After trialling several different medications, there was little improvement and at five months of age, her seizures were coming in clusters and she was diagnosed with infantile spasms, which is a more severe form of epilepsy as it affects the whole brain.

At her worst, Indi was having 300+ seizures a day. She was also diagnosed with left hemiplegic cerebral palsy at the same time so this was a lot of information to take in. Both the seizures and the medication made her very drowsy so she slept a lot and when she was awake, she was seizing almost constantly. The five anti-epileptic medications she was on were not very effective so at the age of eight months, her

neurologist suggested that Indi may be a good candidate for radical brain surgery where they would disconnect the right hemisphere of her brain.

We were told that there was a small window of opportunity to do the surgery before the seizures did any further damage to the healthy side of her brain (the left side). For us, it wasn't really something we had time to think about. If we didn't go ahead with the surgery then, developmentally she would've stayed a four-month-old for the rest of her life.

Eventually, the seizures would've killed her.

So, we made the bold decision to allow the surgery to go ahead.

Indi was only 10 months old and physically handing her over to the surgical team was gut wrenching.

I was in a flood of tears and wondered if we were making the right decision. What if she didn't make it through the surgery? It was the longest nine hours of our lives and seeing her afterwards is something I will never forget. She was hooked up to a lot of different machines with IV lines coming out of her little body. Recovery was long and slow but she was making progress and eventually was weaned off all medications.

Fast forward to now and Indi can run, jump, talk (a little too much!) and is attending both mainstream and special education schools.

She was diagnosed with autism when she

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was four and has also been diagnosed with left hemianopia (loss of the left field of vision in each eye), ototoxicity (loss of the high frequency part of her hearing), adjustment disorder and mild scoliosis. Indi is learning new skills all the time and although she has to work extra hard at most things, she gets there in the end and we celebrate all of her achievements!

We would definitely do the surgery again as she now has a much better quality of life.

I have spoken and met with other families whose children are yet to have the surgery and I have given them practical advice and offered moral support. When Indi had her surgery, I felt very isolated as I wasn't involved with a support group and wasn't aware of anyone else who had gone through this surgery. Now, we have the ongoing support from the Hemispherectomy Foundation of Australia and it's great to know we can share stories and ask questions when we have concerns. It's nice to know we are all here to support each other through this journey.

www.sourcekids.com.au

WHEN THE SMITH FAMILY HAD EXHAUSTED ALL AVENUES The Smiths live in Adelaide and have three children, Jessica (12), Thomas (10) and Lily (eight).

Thomas had a stroke in utero 24-48 hours prior to birth resulting in left hemiplegic cerebral palsy, and epilepsy onset at age four.

Susie explains how they made the decision for Thomas to have the hemispherectomy.

Thomas had exhausted all avenues of AEDs (anti-epileptic drugs) without any success controlling them apart from a beautiful 18-month seizure-free period right before starting school. Thomas’ seizure activity was concentrated in just one hemisphere of his brain (the scar tissue resulting from his stroke) and as they could confirm this, it was explained to us that there was a good chance of stopping the seizures with a hemispherectomy.

We were referred to a surgeon, Dr Mark Dexter, at Westmead Children’s Hospital in Sydney and we travelled there for further testing and to meet with him. In a weird way, Thomas was the perfect candidate for this surgery as he already had hemiplegic cerebral palsy and a 50% field cut in vision of both eyes – both of which would have resulted from the surgery anyway – so he had a lot less to lose than many other candidates who may not already have had the physical disability or vision loss.

Obviously, we had researched the surgery a lot and managed to communicate with many other families across Australia and America whose children had been through the procedure and so we felt very well informed. After meeting Dr Dexter, we felt very sure this was our best chance at giving our son a seizure-free life. We called up and booked him in much like making a dental appointment, which was extremely bizarre.

September 23, 2015… a date I will never, ever forget.

Just hours afterwards in ICU we walked in to

see our boy. He moved his left arm (so there seemed to be little to no further physical deficit) and turned to us and whispered: “Get me out of here”.

So, he could talk and move.

Massive, massive relief followed.

Twenty days post-op we were released from the hospital. Thomas was skinny and weak but, incredibly, despite having half of his brain removed, he required no further rehab physiotherapy and we had seen no seizures.

Obviously he felt confident the seizures had gone too as his anxiety had gone… literally gone – overnight. It was beautiful to see him calm and able to be relaxed being out of our sight.

The following few months consisted of many ups and downs with regular bouts of vomiting, dizziness, fever, headaches and double vision. We were convinced that he had hydrocephalus. When you remove half a brain, the void is filled with cerebral spinal fluid (CSF), which our bodies are constantly producing. If the body can’t regulate the production of fluid post-op, it can result in high head pressure.

After months of having a very sick little boy we were flown from our home in far north SA by the Royal Flying Doctor Service to the Women’s and Children’s Hospital in Adelaide, where after undergoing a drug-free lumbar puncture (this was absolutely horrific) they were able to confirm that Thomas had high head pressure and needed a shunt to be placed. We flew back to Sydney for this comparatively minor surgical procedure and after a two-night hospital stay he was out again.

Since December 2015, we have had a very healthy, strong, happy and seizure free little boy.

Would we do it again? In a heartbeat.

Epilepsy is such a horrible thing, so unpredictable and it affects the entire family.

There have definitely been other challenges since surgery but they all fade in comparison to living with epilepsy.

My advice to other families faced with this decision is to do your research. Speak to and connect with other families. Ask questions.

Have multiple meetings with the surgeon until you feel all your questions have been answered. And if you don’t feel comfortable with your surgeon, keep looking.

Two Facebook groups which were/are incredible sources of information and support are Hemispherectomy Foundation Australia and The Hemispherectomy Foundation. These groups meant we were instantly accessing over 2100 people who know firsthand what it is like pre/ during/post-op. They’re understanding, open, honest, empathetic, supportive and completely non-judgemental – and were instrumental in our decision making process.

If you would like further information or support please contact the Hemispherectomy Foundation Australia.

www.hemispherectomyaustralia.org.au

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SPORTY KIDS - RUGBY

BY RACHEL WILLIAMS

MAKING ‘MURDERBALL' A POPULAR PURSUIT AUSTRALIA'S PARALYMPIC WHEELCHAIR RUGBY REPRESENTATIVES, KNOWN AS THE STEELERS, ARE BACK-TOBACK PARALYMPIC CHAMPIONS. WITH SYDNEY SET TO HOST THE 2018 WORLD CHAMPIONSHIPS, THERE HAS BEEN A REPORTED INCREASE IN INTEREST IN THE SPORT. Wheelchair rugby is an intense, physical team sport for male and female athletes with an impairment in both upper and lower limbs. It is played with a volleyball on a basketball court and combines elements of ice hockey, basketball and football.

Four players from each side can be on the court at one time and players are classified by their impairment, with a points value ranging from 0.5 (least functional) to 3.5 (most). The four players on court cannot exceed a combined eight points. The ball can be carried, dribbled, or passed in any way except by kicking. The ball must be bounced at least once every 10 seconds and the game is played in eight-minute quarters. The sport can be very physical as athletes attempt to carry the ball over the opponent’s try line - in fact, it is often referred to as Murderball.

While that may not sound like the sort of sport you would like to encourage your young children with a disability into, it doesn't mean they can't start watching and learning until they are physically ready to take part. Catherine Lander, the manager of Marketing and Communications at Disability Sport and Recreation in Victoria, says the

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game promotes mateship and socialisation and helps improve fitness, stamina and strength.

“There isn't an age limit, but given the fullcontact nature of the game, and the fact that many of the players have an acquired disability, most of the interest in the game comes from adults. In Victoria, we have a couple of teenagers who are interested in playing,” Catherine explains. Most wheelchair rugby participants have spinal cord injuries, but there are a few players who have cerebral palsy and some quadruple amputees also play. “To be classifiable in wheelchair rugby, you must have loss of function in at least three of your limbs,” she says.

Ryley Batt is Australia's best known wheelchair rugby player - the dual Paralympic gold medallist was first introduced to the sport as a 12-year-old during a demonstration event at his school.

Batt, who was born with no legs and required an operation to separate his fingers soon after birth, used a skateboard to move around before he adapted to being a wheelchair user following the school display.

He made his Paralympic debut at Athens in 2004, just a few years later where, at 15, he became the youngest ever wheelchair rugby athlete to compete at a Paralympic Games. Batt's now gearing up for the 2018 World Champs in Sydney, which Disability Sports Australia CEO Jenni Cole says will be a wonderful opportunity to promote the game.

“What we've seen, and I see this everyday, is that when people play sport and they've got a disability it's more than just playing sport, it changes their lives,” Jenny told rugby.com.au.

“We see athletes for example who have had a spinal cord injury and during their rehabilitation have thought that life's over, that there's not much more they can do.

“When they suddenly realise they can play sport and they see other people with similar injuries doing what they never imagined they could do again – having fun, being a bit crazy, it changes their lives.”

Jenny says wheelchair rugby is already one of the favourite Paralympic sports for Australians as a result of our success and next year's World Championships will continue to grow support.

“We're number one in the world, we're the world champions but I think what we will find is it will bring wheelchair rugby to the broader community in a way that we haven't seen since Sydney 2000,” she said.

HOW CAN CHILDREN WITH DISABILITY GET INVOLVED? • Wheelchair Sports NSW www.wsnsw.org.au/sports/rugby • Queensland: Sporting Wheelies and Disabled Association www.sportingwheelies.org.au • Disability Recreation and Sports SA www.drssa.org.au • Victoria: Disability Sport & Recreation www.dsr.org.au • ReboundWA formerly Wheelchair Sports Association WA) www.wheelchairsportswa.org.au

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Q: WHAT DO YOU GET WHEN YOU CROSS AN OCCUPATIONAL THERAPIST WITH AN OLYMPIC RUGBY STAR?

sense rugby A:

...AND IT IS AWESOME!

Carlien and Jesse Parahi started the concept 18 months ago, to meet both the sensory and physical needs of children, as well as give them an opportunity to be part of a supportive team.

“As the program developed, we started realising the extensive benefits that it could have for kids, particularly in the areas of social skills, sensory processing, emotional regulation, gross motor development and attention to task,” explains Carlien.

Carlien is a paediatric occupational therapist and is married to Jesse - an Australian Rugby 7s Olympian. “We frequently discussed the positive impacts rugby would have had personally for Jesse growing up and so many of the kids that I worked with required heavy work, physical play and deep pressure on a frequent basis,” she said.

So, it made sense to create Sense Rugby – and now, about 100 kids are enrolled for regular sessions in various locations in New South Wales.

“We have seven OTs who work part-time delivering Sense Rugby groups and various volunteers, students and mentors who come along for the fun! We’re lucky to have Olympic Gold Medallist, Charlotte Caslick, as our ambassador and her fellow Gold medallist and teammate, Emma Tonegato, who is also an OT student, as a regular visitor to our groups.”

Hour-long sessions involve modified rugby drills mixed with OT-based activities and finish off with a rugby game.

“The sessions are very physical and utilises tackle bags and hit shields to get the input that so many of our kids crave,” Carlien explains.

“We also focus on providing different ways for kids to calm throughout the group so they can practice the process of regulating and calming down after intense movement or competition.”

Around 70 per cent of Sense Rugby participants have a diagnosis of Autism Spectrum Disorder while others have Down syndrome, an intellectual disability, ADHD, sensory processing difficulties, anxiety or gross motor delays.

Carlien says...

ANYONE CAN TAKE PART IN THE PROGRAM REGARDLESS OF THEIR DIAGNOSIS. “We’re open to any child who wants to join Sense Rugby and usually describe the program as helpful for kids who find joining a regular sports group difficult. This is because we’re really focused on figuring out why joining a team is hard for that child and working on that,” she says.

“Kids who have a history of trauma, abuse or neglect also often join in with great success.”

Carlien says the feedback from participants has brought the pair a lot of joy.

“We have had kids who did our program and then followed it up with joining a team to play regular games, which is the biggest measure of success for us. We've also seen huge improvements in social skills, emotional regulation, attention to task, confidence, gross motor skills and even academics! The best thing by far though is seeing the kids smiling and enjoying movement and also seeing the parents join in and relive their own footy days!”

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n a n r e f f e H FAMILY PROFILE

MEET THE

FAMILY

Heffernans THE

Lenice and Andrew, Dexter (who is six) and his two younger sisters, Charlotte and Kaisa.

WE LIVE: South of Sydney in NSW. We are lucky enough to live near a beautiful river and some lovely beaches.

DEXTER’S DIAGNOSIS: Dexter has level 4-5 spastic quadriplegic cerebral palsy, with dystonia. He has cortical vision impairment and is nonverbal. Dexter’s brain damage was found when he was 30 days old. He was a premature baby and spent 122 days in three neonatal intensive care units (NICUs) before coming home.

When Dexter was 13 months old, he was diagnosed with hepatoblastoma (liver cancer). He received six rounds of chemotherapy, a few surgeries and is now four years cancer clear.

Dexter needs a wheelchair and is totally dependent on us. He is a clever, cheeky boy who attends a mainstream primary school.

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Life is busy. Dexter’s cerebral palsy and vision impairment are our focus, now that he is cancer clear. He works with determination during weekly physiotherapy and hydrotherapy sessions. Some days, he is so strong and our hearts burst with pride and happiness.

Some days, he struggles to take a step in his walker and we feel sad and frustrated by his cerebral palsy and how it impacts on his life.

Dexter also has some speech and occupational therapy sessions but these are not as regular. Until he started school, he was also enjoying hippotherapy (horse riding).

We provide Dexter with time in his standing frame each night for an hour or more. He uses his walker most afternoons.

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Dexter has the use of an Eyegaze system and is learning to operate an iPad with his eyes. He can select games to play and we hope this will become a form of communication for him. We encourage him when he focuses on objects and have a few lights and displays to help him ‘learn’ to see.

Dexter has a special high-low chair for feeding and to help him sit at eye level at the family dining table. He also has a shower/ toilet chair. He enjoys his food, eats mashed meals and drinks thickened fluids.

Dexter has progressed to annual scans to check his body has not produced any cancer cells.

OUR FAVOURITE PLACE TO GO AS A FAMILY IS: We love going to our local river. We carry Dexter’s beach wheelchair down the steps and float him across to the sand bar. The water is shallow and the river is beautiful. We can swim, play in the sand and enjoy being together.

OUR FAVOURITE ACTIVITY IS: We love playing our ‘steam train’ game.

Dexter’s sisters stand on his high-low chair and Dexter’s dad pushes them all around the house. Steam train noises are made, the girls laugh and Dexter loves it. Some walls have been dented and dinged, but everyone has fun.

OUR BIGGEST CHALLENGE IS: Finding wheelchair accessible places where we can take Dexter without having to carry him down stairs or rough sections of ground.

Accessing food for Dexter when we are out on adventures is difficult. The girls can eat anything, from anywhere and can feed themselves in the car, if needed. Dexter needs mashed foods, so it is more difficult to cater to his needs. He has to be fed. He often has to wait until we get somewhere, even when his sisters are sitting beside him and eating. We usually take his food as we know it’s hard to find food for him.

BEST PARENTING TIP: Just run with it. Whatever happens, accept it. Embrace it, if you can. Just keep going.

There will be heartache and days harder than you ever imagined possible. But, there will be love and pride that you have never previously felt. The little moments are important.

THE BEST/MOST USEFUL ADVICE WE’VE BEEN GIVEN: Be Dexter’s voice. Be his advocate. Fight for him. Expect inclusion and acceptance and be ready to fight for it, when it is missing.

AND THE MOST ANNOYING/ UNHELPFUL ADVICE: “You are doing such an amazing job.” Or “I don’t know how you do it!” (Usually said with a pitying tone.)

THIS JOURNEY HAS TAUGHT US: Patience. We have learned to celebrate the little things. We find happiness wherever and

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whenever we can. We let Dexter guide the way and we follow his lead.

WE WOULD NEVER MANAGE WITHOUT: Each other. My husband and I have been through incredibly difficult times. We were forced to live apart for the three months our son was in a Sydney NICU (before coming to our local hospital for another month).

Dexter’s cancer fight was terrifying. He has had several surgeries. My husband and I have seen our son being resuscitated more times than we can count. We have high expenses, due to Dexter’s cerebral palsy, therapy and equipment. We had to renovate our home, to make it wheelchair accessible.

Most days are challenging and emotionally draining. Without the support of each other, we might not have the strength to continue.

PRODUCTS WE LOVE: •W e need Dexter’s standing frame, high-low chair, walker, shower chair and wheelchair.

•W e love Leckey products, but have used others because we have bought some things second (or third) hand.

•T AD NSW has supported us with modifications to Dexter’s walker, saving us hundreds of dollars.

PEOPLE (OR BUSINESSES) WE LOVE: •D exter’s paediatrician has brought us a lot of our bad news days. He also detected Dexter’s cancer, saving his life. Dexter’s oncologists and surgeon also saved his life.

•D exter’s GP makes sure Dexter can always get an appointment and has followed up, after hours, to make sure Dexter was okay.

•W e love Dexter’s physiotherapist, who has been with him for four years. She believes in him, supports us and helps Dexter be the strongest and most determined he can be.

JUST RUN WITH IT. WHATEVER HAPPENS, ACCEPT IT. EMBRACE IT, IF YOU CAN. JUST KEEP GOING.

•W e love Dexter’s swimming teacher, who has helped Dexter with hydrotherapy and also provides male friendship.

•O ur community has provided us with a lot of support and many people in our area know Dexter. He is often spoken to, when we are out and about.

•O ur latest family photos are from a photoshoot with Kate Vickery.

Kate specialises in helping families who have a child with a disability enjoy happy, relaxed photoshoot sessions. www.kvphotography.com.au

SOCIAL MEDIA LINKS: www.lovedexter.weebly.com www.facebook.com/love.dexter.31 www.instagram.com/lovedexter3 www.youtube.com (search Love Dexter) www.twitter.com/LoveDexter3

SPRING 2017

55

REDEFINING ABILITY FOR 50 YEARS.

info.au@permobil.com l 1300 845 483 www.permobil.com.au