Source Kids Autumn 2021

18

24 48

contents 5 We love

6 Welcome

49

SUPPORTING SIBLINGS 10 Tips for parents – understanding and supporting siblings

Photography:

14

Nykie Grove-Eades

Life as a sibling

44

62

18

24 How to find the right support worker for your child

30 Delivering a difficult

The fight against rare diseases

52

Top picks – adaptive clothing and footwear

diagnosis: a parent’s

56

perspective

Transition to the

36

workplace

Updates from our

62

Growing your family

brand ambassadors

Product review –

20

40

Great reads for

Helping your child to

68

brothers and sisters

‘cross the midline’

Watches + reads

22

44

69

Support groups and

Top picks to help

Apps to help visual

services for siblings

core skills

motor skills

17

48

70

NDIS and your

Living with a

Living with

school age child

rare disease

heart disease

bathroom aids

Choose from 1,000s of independent disability support workers.

At Mable, we make it easy for you and your kids to find support workers you truly connect with. No matter what type of hobbies, interests or passions your child has, there’ll be people who share them. People who are happy to share their experiences and expertise to help your child achieve their goals.

Whoever you choose, they’ll have all the relevant police and reference checks. While for complete peace of mind, you can also see who has Working with Children Checks.

So, if you want real choice over your NDIS support, sign up to Mable for free today.

FUN STUFF

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SPREAD KINDNESS & INSPIRE

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Kind is Cool has a range of cool awareness tees and hoodies for kids and adults alike that help promote and lead by example for our younger generations that being KIND IS COOL. Show your pride for Bully Zero, knowing that Kind is Cool donates $2 per item to help educate and empower everyone about bullying. kindiscool.com.au

B L U E T O OT H Look at what has just landed – Ems for Kids Audio Headphones!

A story about making friend s, inclusion and teamwork!

Comfortable, sturdy and safe, they work as Bluetooth headphones, but also have a detachable audio lead to plug into devices when required. With a volume limit of 85dB, they ensure little ears are protected from hearing damage, so mum and dad need not worry about the volume being too loud! earmuffsforkids.com.au

S T O RY T I M E W I T H H A R RY Linda Williams, mother to Harrison who is fighting Duchenne Muscular Dystrophy has written a beautiful story about inclusion starring her son.

Harry McWilliams is about a boy who loves adventure and who comes across a new friend in need of help. Harry, is in his wheelchair and is uniquely able to help solve his new friend’s problem. A beautiful story for all children. Now available as an ebook on Amazon. amazon.com.au

I SSU E 26 | AU T U M N 2021 5

WELCOME

magazine

1...

2 0 2 e r e h t y e h Oh wn! o d w o l s u o y n a now c

A

nyone else feel like they were willing 2021 on, so we could all see the back of what was a horrific 2020, and now you’re trying to put the brakes on? I sure am.

Here at SK we’ve approached the new year with gusto and a jam-packed calendar of content, mags, new digital stuff and, yes, finally…events! With three expos underway (Sydney in April, Melbourne in May and Brisbane in July), plus a new expo as we head to Perth later this year, it really is all systems go and we are so damn happy about it!

And, if you haven’t seen or heard about our sister brand Source Mama we’ve come out all guns blazing on that front too, with some incredible new content and writers, a swag of cool comps, The Gathering intimate dinner series across three states, plus plenty more up our sleeves that we’ll be revealing over the coming months.

So if anyone could arrange for time to slow down just for a minute, we’d love that! Lucky the awesome Source Kids team love what they do and keeping busy!

Speaking of busy, our first 2021 magazine, our autumn issue is here and it’s a beauty. This issue we focus on siblings. There’s an interview with Kate Strohm, the founder of Siblings Australia who works tirelessly to advocate for the needs of siblings, tips for parents on providing support as well as a look at other groups and services to help.

We also look at how to find the right support worker for your child, 10 tips for delivering a difficult diagnosis from a parents perspective, the fight against rare diseases and we hear from our awesome foursome brand ambassadors on what they have been up to.

I hope you enjoy the read as much as we’ve loved putting this issue together.

Emma x

6 SO U RCEKI DS .CO M . AU

SOURCE KIDS LIMITED PO Box 690, Noosaville QLD 4566 ABN: 36 614 552 171 sourcekids.com.au Send all letters and submissions to: editor@sourcekids.com.au WRITERS AND CONTRIBUTORS Nicole Davis, Rachel Williams, Emma Price, Katherine Granich, Kelly Wilton, Leap in! and Laura Spiegel.

PARTNERSHIPS Carmen Smith Head of Partnerships & Strategy carmen@sourcekids.com.au 0472 548 245 ADVERTISING Matthew Rainsford Head of Sales & Business Development matthew@sourcekids.com.au 0499 017 354 Naomi Sirianni Business Development Manager naomi@sourcekids.com.au 0447 755 043 DIGITAL CONTENT EDITOR Nicole Davis nicole@sourcekids.com.au GRAPHIC DESIGN Emma Henderson COVER PHOTO Nykie Grove-Eades PUBLISHER/CEO Emma Price Editorial and advertising in Source Kids is based on material, written and verbal, provided by contributors and advertisers. No responsibility is taken for errors or omissions, and opinions expressed do not necessarily reflect those of the publisher. All material in Source Kids is subject to copyright provisions. No part of this publication may be reproduced without written permission by the publisher.

FUN STUFF

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visionaustralia.org, legobraillebricks.com

I SSU E 26 | AU T U M N 2021 7

How can Astris PME help you?

As market leaders in special needs equipment in Australia, Astris PME can provide solutions that match the needs of people with a disability, and help therapists achieve the best outcomes for every client, in every age bracket. We have a huge range of trial equipment available so if you would like to make an appointment with one of our Specialist Consultants, or enquire about any of the products and services we offer, please call us. We will be happy to help!

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Sponsors Sponsors

Understanding & supporting siblings:

T IPS FOR PARENTS

Kate Strohm from Siblings Australia provides some insight on how parents can help siblings of children with a disability thrive.

G

rowing up as the sibling of a child with a disability can be so rewarding but it also presents unique challenges which can be confusing and difficult for children to deal with. Siblings can have similar stresses that parents do, but without the understanding, maturity and access to peer support that adults may have to help them deal appropriately with the emotions they may be experiencing.

Siblings Australia shares what some of these struggles might look like.

Remember that every child has their own unique set of circumstances and different family dynamics, but even so there are common issues that come up a lot for siblings.

Think of the child who is quiet and seems to go with the flow. They are not expressive about their wants and needs and go under the radar a lot. When they face challenges, they might tend to withdraw and hide from the situation.

Then there’s another child who pushes buttons because they don’t have the tools to express their difficult emotions.

They might act up to make themselves be seen and heard in a world where they feel they don’t matter as much. They might revert to acting like a younger child again, cling to their parents and not want to separate from them.

10 SO U RCEKI DS .CO M . AU

Another child might adopt the role of perfectionist. Sometimes obsessively to compensate for the limitations of their brother or sister. They might try and please their parents and others and feel it is their job to take care of others’ feelings, but not know how to deal with their own.

Also watch out for the child with low self-esteem. They might worry about the future and feel hopeless about things changing for the better. They might feel there is something wrong with them but not talk to anyone about it because they

Every child has their own unique set of circumstances and different family dynamics believe they don’t deserve to be heard.

Stomach aches or physical complaints might arise.

For a lot of children, there will be embarrassment about staring and pointing. Anguish over taunting and teasing. Guilt over wishing their brother or sister was not there. Worse is the sense of isolation that no one else gets it and feeling different to peers with no one to see, hear, know or reach out to.

SUPPORTING SIBLINGS

I SSU E 26 | AU T U M N 2021 11

Walk around freely & unaided

Use at school or home

www.dejay.com.au therapy@dejay.com.au

The Walking Specialists

Grows with you

SUPPORTING SIBLINGS

SO, HOW CAN PARENTS SUPPORT S I BL INGS? Give children information about their sibling’s disability/ illness at their level of understanding, increasing the detail as they age or ask questions.

Help children share and express their feelings – both good and not so good.

Keep in mind that ALL siblings love and loathe each other at different times. Set an example by showing it is okay to share difficult feelings. Sometimes drawing or writing a journal can also help them to express their feelings – explore with your child what works for them.

Listen to your children and try to ‘walk in their shoes’. Let them know you understand that it can be difficult for them sometimes.

Watch for signs of stress – all children have stresses from time to time, unrelated to being a sibling. However, if a child shows signs of stress as mentioned above, you could explore if there might be sibling issues.

BOOK OF CHOICE FOR B OT H PA R E N T S A N D P RO F E S S I O N A L S SIBLINGS, BY KATE STROHM (Wakefield Press) Siblings tells what it is like to grow up with a brother or sister with a

Help each child feel special – try to spend one-on-one time and celebrate all family members’ achievements. Help your family to recognise each other’s strengths and weaknesses.

Let your children know that you appreciate their help but try to not overload them with responsibility.

Help them to develop their own independence and interests.

disability or illness. The siblings of children with a disability are often the overlooked ones in families struggling to cope.

Kate Strohm, a sibling herself, bravely shares the story of her journey from isolation and confusion to greater understanding and acceptance.

She provides a forum for other siblings to describe their challenges and provides them with strategies to make sense

Sometimes siblings will be upset by others’ reactions. Help them learn ways to respond in ways that they are comfortable.

Help them make contact with other siblings – having fun and sharing experiences with kids who understand can be enormously helpful for siblings.

Ultimately, happy healthy families listen to and respect each other. Each member feels appreciated and it is understood that everyone has strengths and weaknesses, and that everyone is important. They find time for each other, have fun together, share interests but also allow for independence of all members.

of their experiences.

For more information: Siblings Australia has a number of resources and services to help parents, including via the parent page online at siblingsaustralia.org.au In addition, there are one-onone parent information sessions on support for siblings and these can be claimed through the NDIS. Parent or professional workshops and webinars can also be held.

The Sibworks program is especially designed for young sibs to come together and share their experiences while having fun.

I SSU E 26 | AU T U M N 2021 13

a s a Life g n i l sib T

he emotional impact of being a healthy sibling of a brother or sister with disability can be overwhelming and, in some cases, this impact can be overlooked to the detriment of the family unit.

One organisation is helping thousands of affected siblings across the country to find their voices and better articulate their needs.

It’s a skill that took Kate Strohm decades to herself establish and now she is committed to sharing her story and skills as Siblings Australia CEO. Kate’s sister, Helen, lived with physical and intellectual disability as a result of her cerebral palsy and passed away in 2013 at the age of 64.

Growing up, despite being surrounded Siblings, based on the collective by a loving family, Kate recalls the stress experiences of other people in a similar caused by Helen’s situation and how her situation to herself. feelings were often too big for a young It was this book that helped Lisa child to manage without support.

Ratcliff, who grew up alongside her “There was a level of anxiety around younger brother, Marty Campbell, who my sister’s struggles with daily living and has Fragile X, a genetic condition that her behaviours but, also, she had intense causes intellectual disability, behavioural seizures that were scary for all of us,” and learning challenges.

Kate recalls.

Lisa, now 50, recalls a childhood “I felt quite isolated and confused. I living on Scotland Island, on Sydney’s felt loving and protective of her but didn’t northern beaches, with Marty, her sister understand all the extra attention she Danielle and their single mum. received, and then, as I became older, felt “There wasn’t much offered to guilty about the many things I could do siblings in the 1970s and 80s. There was that she couldn’t. very low awareness of “I also felt Fragile X, not only in the I felt loving embarrassment when and protective community but in the out and about as people medical space, and barely of her but didn’t any services to support would stop in their tracks and stare as we moved my brother, let alone a understand along. sibling,” Lisa recalls. all the extra “There was a lot of “I had no concept of attention she grief too – for her and being a sibling and how received the difficulties she faced, it has impacted my life for my parents for their until I read Kate’s book struggles, and for me, too, there was a Siblings as a 30-year-old. As a child, huge sense of loss, including not having then a teenager, I accepted that the lion’s the kind of sibling relationship that others share of attention went to Marty and had.” tried to do everything I could to alleviate After suffering anxiety and panic the stress on my mother by keeping the attacks as a young adult as a result of house running smoothly and watching her situation, Kate sought help from a over my younger brother and sister, when therapist.

I was still a child myself.

Discussing her trauma with a “In my own experience and observing professional led her to write a book, others, siblings grow up a lot quicker than

SUPPORTING SIBLINGS

their peers. Either there is an expectation they will do more to support the family or they naturally fall into that caretaker role, typically forsaking their own needs for others.

“The feeling of being responsible for the care and wellbeing of others is a deeply ingrained pattern of behaviour.

Setting boundaries is not one of my strengths and I’m sensitive to anger and conflict, of which there was plenty in my younger years.

“As a teenager there were times I thought I would break from the pressure and the heartache. I had friends but I was lonely due to my messy family situation.

Occasionally an adult would notice and reach out to me, praising me for the load I carried. It meant a lot to be noticed.”

That sense of acknowledgement is a key aim of Siblings Australia, which Kate established after discovering a similar program in the US, where she was based in 1998 while finishing her book.

“The seed was planted to develop a similar program here in Australia. I sent a one-pager to my contacts in the health and disability sectors, and was extremely fortunate to have Dr Jon Jureidini, the Head of Psychological Medicine at the Women’s and Children’s Hospital in Adelaide, support my idea,” she recalls.

There are an estimated 300,000 siblings across the country and Kate has run workshops for parents and professionals throughout Australia and internationally to help build understanding and skills to support siblings.

“The last 22 years have had such a huge impact on me. I have travelled extensively to spread the word about siblings, around Australia and overseas, and made such wonderful connections,” Kate says.

“I have learnt that family issues when a child has disability are very

similar the world over. Families are the with special needs, I point them to Kate’s most important factor in any child’s book and ask them to consider the impact development but especially a child with of devoting the majority of the parent’s disability. time and attention to one child, possibly “If we can strengthen all members at the expense of other children in the of the family, there will be benefits for family,” Lisa explains. them all, as well as benefits for the whole “Families are usually stressed community. managing the child with disability but for “I have also learnt that it isn’t difficult the sibling there’s the potential for longto support a sibling. They just need to term trauma. feel listened to and understood, and to “There are so many challenges that can be connected with resources and services never be overcome – your sibling never that can assist them to manage the grows up or out of certain behaviours or challenges. And that the need for assistance might look different and care and there is Despite the as the sibling moves challenges, both grief realising they won’t through different stages achieve the normal women concur of their life. milestones, like getting that there “We have developed married and having their a range of resources and own family." are positives other services. We have Kate’s advice to throughout carried out research and someone feeling isolated the journey contributed to research and insecure about their and have advocated situation, is to talk about strongly at the federal government it with parents, a trusted family member level for siblings to be recognised and or a school counsellor and she suggests supported,” she says. closed Facebook chat groups for those old “Sadly, siblings are still very much enough. overlooked in policy and practice.”

And despite the challenges, both After many years with limited women concur that there are positives funding, the organisation received a throughout the journey. three-year grant last year, funded by the “Many siblings can look back and NDIS. see positives in their situation growing “We need to grow and develop our up. They can say that they have more services further to ensure sustainability tolerance of differences and more beyond that time, so my ‘baby’ has a compassion,” Kate offers. future,” Kate says.

“They might have greater insight into “We are revamping our website, the important things in life and might developing e-learning resources for learn skills along the way that they can use parents and providers and, later this year, in a career.” rolling out a Train the Trainer program Lisa concludes: “Disability in a family for facilitators of our Sibworks peer brings many challenges but it also fosters support program for young children.” empathy and deepens emotional maturity Lisa wishes she had the support – and you really appreciate the wins when services now available via Siblings they happen.”

Australia.

“When I meet families with a child

By Rachel Williams I SSU E 26 | AU T U M N 2021 15

16 SO U RCEKI DS .CO M . AU

I N A S S O C I AT I O N W I T H

NDIS and your school ag e child: Assistive technology in the learning environment The team at Leap in! gives us a rundown of the things you need to know about how the NDIS addresses assistive technology in the classroom.

E

ducation is one of the most important stages of your child’s life and there are ways the NDIS can help to ensure their educational experience is inclusive and interactive – even if you find your child is learning from home temporarily.

Reducing and removing barriers to learning

No two kids are the same, which is why the Australian curriculum is designed to cater to all kinds of learning needs.

In order to support teachers to create this inclusive learning environment, the NDIS may allocate funding to your child’s NDIS Plan to assist in purchasing assistive technology (AT) that will support them throughout their schooling years.

In order to access AT supports, they need to be considered ‘reasonable and necessary’.

Assistive technology in the classroom or learning environment Assistive technology in the classroom (or learning environment) refers to any device or system that enhances your child’s ability to participate in their education.

The NDIS may be able to help fund a broad range of assistive technologies, from “high tech” programs and electronic devices such as speech generating devices to “low tech” solutions such as therapy cushions or furniture grips.

Here are a few examples of assistive technology and how it can help your

child in the classroom or learning environment: • Power wheelchairs – to improve a child’s ability to get around their learning environment • Hearing aids and speech generating devices to help children communicate/ participate in classes • A pps for tablets that can help with a child’s communication • L iteracy and numeracy support software • Computer modifications such as an adjusted keyboard, mouse or on screen keypad • P rosthetics or orthotics to help with a child’s mobility In some cases, the NDIS may also help fund the repair costs associated with these technologies and devices.

Support from the NDIS vs support from the education sector

While the NDIS may help to fund some types of assistive technology that will help your child throughout their schooling years, the education system is still responsible for ensuring your child has access to the school curriculum.

Here are a few examples of what schools may provide to assist with children’s’ learning needs: • Modified software/hardware required for classroom subjects • Braille textbooks • Building modifications (such as ramps to classrooms) • Non-transportable equipment for your

child that remains at the classroom • Specialised school furniture • Eating utensils • Bathroom supports Individual schools are required to make reasonable adjustments that ensure students with a disability are able to access education just like any other child. This is why you may find some of your child’s educational supports will be provided by the school they attend, instead of the NDIS. Leap in! can help!

If you have more questions please call 1300 05 78 78, email the at crew@leapin.com.au or sign up to Leap in! plan management today.

I SSU E 26 | AU T U M N 2021 17

Growing your family How to introduce a new brother or sister to your child with a disability

A

dding to your family is an exciting time and also one that also brings about many changes. Change, however, is something that many of our children struggle with, while others may also struggle to understand the concept of being a sibling and having a younger brother or sister join the family unit.

And there are sensory considerations too – babies have a habit of being noisy and introducing new smells into the house! Here are some ways you can prepare your child for what’s to come.

Name the baby One way to ‘make it real’ is to name the new baby early – this is especially helpful for children who struggle to understand abstract concepts.

Start early Don’t leave telling your child to the last minute. You have a huge change coming up in all of your lives and the process of adjustment and understanding for your special sibling will need to be done gently and over time. If you need to transition your child to their own bed or bedroom think about ways to make this a positive experience and not connected simply to ‘the baby’. You should also think about what care arrangements your child might need. If they are going to spend more time with an alternate caregiver or family member, start making changes to the amount of time they spend with them gradually and as early as you can.

Additionally, you may want to talk to your child’s OT about some of the selfcare skills they may be able to do so that they can learn these well in advance and are not left feeling that they have to ‘do more’ just because the baby has arrived.

Visit other babies Giving your child the opportunity to experience other young babies can be a great way to prepare them for what’s to come. Point out babies when you’re out too. Normalise the fact that babies cry a lot and need a lot of individual attention.

18 SO U RCEKI DS .CO M . AU

Talk a lot!

Talk about their new brother or sister a lot so by the time their sibling arrives it already feels like part of their life. If they are able to communicate effectively, give your child the opportunity to ask questions and express any fears and worries they may have.

Make use of social stories and family photos Show your child visually how children and families grow. Social stories can help them visualise the changes that are coming and sharing photos of them when they were young and your own family unit – i.e., your own brothers and sisters can help you explain the way families are made up.

Books about babies and TV shows Find picture books and simple stories to show how life will be once the baby is

born. You can also find simple stories to explain how the baby is growing inside of you. If there are siblings and babies in your child’s favourite TV shows, take the opportunity to point out the relationships and routines. YouTube is also a great resource – search out videos of babies doing what babies do – drinking, sleeping, eating, crying!

A baby of their own Your child may respond well to having their own ‘baby’ to look after. Just be mindful that your child understands the difference between a doll and a real baby that can be easily injured and has

SUPPORTING SIBLINGS

WHEN THE BABY IS HOME: Don’t force interactions However well you’ve prepared, a new baby may still take some significant adjustment time for the new big brother or sister. Don’t force interactions and let your child initiate any interactions on their own terms.

Don’t be alarmed if they show no interest in the baby – it may take a little time for them to accept this little stranger!

Include your child If your child wants to be involved, try to include them wherever it’s possible to do so. Have them sit by you when you’re feeding the baby for example, and give them some safe, simple chores to do – nothing says big brother or sister like being a super ‘helper’.

feelings. You can model behaviours with this ‘baby’ too – perhaps teach some little chores like getting nappies, folding blankets and clothes etc.

Anticipate sensory issues As we mentioned – babies are noisy – it’s part of their job description! Talk to an OT about strategies to help your child. Think about how you can let your child ‘escape’ for a break – do they need a quiet zone for example, or headphones? If your child struggles with communication perhaps they need a signal they can use when they are feeling overwhelmed.

Find some sibling alone time Show and tell new routines

New babies are all consuming but do try to schedule some

Babies love routine, mums love

alone time with your big

routine, special needs siblings love

sibling. Reading, snuggling,

routine - show and tell these routines

playing or even a bit of

with charts and visuals so that your

iPad time together.

child can see what’s going to happen during the day. They will also be able to see the blocks of time that you’ve scheduled especially for them!

I SSU E 26 | AU T U M N 2021 19

BOOKSHELF

Great reads for brothers & sisters

Siblings of children with special needs are amazing young people. Their lives are often very different to that of their friends and they may sometimes need a bit of help while navigating their journey. Here are some great books which provide tips and advice.

WHAT ABOUT ME? A BOOK BY AND FOR AN AUTISM SIBLING,

By Brennan and Mandy Farmer Having a sibling on the spectrum brings great joy.

It also brings a flurry of emotions, challenges and questions. Written by a seven-year-old boy, “What About Me?” works through the day-to-day struggles and joys of being an autism sibling.

MY HOLLY. A STORY OF A BROTHER’S UNDERSTANDING AND ACCEPTANCE,

By Julie Leavitt Wolfe This is a story

about a young boy named Jack, and the feelings he’s had about his little sister Holly, who has special needs. Jack sometimes feels sad because he wants his mum or dad to play with him and his Mega Power People, or take him to his favourite restaurant, “Syd’s”, but they are busy taking Holly to therapy or doctor appointments.

Jack begins to understand that his parents do try to make sure he knows he’s important and loved, and begins to believe, just like his mum, that one day Holly will be able to do anything she wants!

2 0 SO U RCEKI DS .CO M . AU

LEAH’S VOICE,

By Lori Demonia

BILLY’S SISTER: LIFE WHEN YOUR SIBLING HAS A DISABILITY, By Jessica Leving

RULES, By Cynthia Lord

on the difficulties

Growing up with a

Twelve-year-old

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sibling who has a

Catherine just

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disability can be

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life. Which is near

autism. Children

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Based on the

you have a brother

or sister with

author’s real-life

with autism and

special needs may

experiences,

a family that

find it difficult to

this unique and

revolves around

explain to their

touching children’s

his disability. She’s

friends or feel

book explores how

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disappointed

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the rules – from

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Leah’s Voice tells

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the story of two

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sisters facing these

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his embarrassing

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aim of helping

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devotion, one sister

siblings of kids

summer Catherine

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the importance of

identify, express

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Kristi, the next-door

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friend she’s always

acceptance.

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and spark family

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Leah’s Voice is a story that touches children encounter

LITTLE BIG SISTER, By Amy Mccoy Winner of the 2017 Next Generation Indie Book Awards for Children’s Fiction. Meet nine-year-old Katie, the little sister who feels like a big sister. Her eleven-year-old brother, Mikey, has autism. Katie can ride a two-wheeler, but Mikey’s bike still has training wheels. Katie rides the bus to school, while Mikey takes the special needs van. When a new student with special needs joins Katie’s class, she notices that some kids just don’t “get it” about autism and other disabilities.

SUPPORTING SIBLINGS

Support Groups & Services for siblings These services aren’t hugely plentiful, but here are the main ones we’re aware of. If you know of any others, do get in touch and tell us about them!

Siblings Australia This organisation works tirelessly on behalf of siblings of children and adults with a disability or chronic illness.

They create opportunities for siblings to connect with others who share similar experiences. They host a closed Facebook group, SibChat, and website discussion forum, SibChat forum, for adult siblings, and co-facilitate, with the Sibling Support Project in the US, a closed FB group for teens, SibTeen. The Sibworks program is a structured peer support program for younger siblings which aims to reduce social isolation, enhance social networks, improve relationships between family members, and increase children’s resilience. Additionally, the organisation has developed a number of valuable resources for siblings, parents and professionals. For information on all the services available to families and siblings visit siblingsaustralia.org.au

environment. Just like every other Flying Fox camp, fun is definitely at the core of SOCS! flying fox.org.au/programs/ camps

SOCS (Siblings of Camp Sababa) from Flying Fox Flying Fox is a youth led organisation that opens up life-changing opportunities for kids with special needs. They promote positive social interactions by running fun recreational camps and their SOCS program supports siblings of their campers (and of young people with a disability more generally). SOCS hosts camps and weekends away for groups of young people with the aim of providing an opportunity to connect with others who share a similar life experience in a supportive, friendly, fun-filled

The Young Carers Network Part of Carers Australia, and providing services across Austraila, the Young Carers Network is a place for young carers including siblings who provide support to a family member to learn about support services, access resources and share their story and opinions. youngcarersnetwork.com.au

22 SO U RCEKI DS .CO M . AU

Autism Camp Australia This camp program supports autistic young people and their families to enjoy a tailor-made program of capacity building social learning and life skills activities.

At each of their camps (one in Byron Bay and one on the Sunshine Coast) there is a Siblings program, which allows siblings to come together, have fun, share experiences and learn ways of dealing positively with the challenges they face as the sibling of an autistic young person.

Each camp has a whole heap of fun activities such as paddle-boarding, rock climbing, arts and crafts, pool games and more. They also run the aforementioned Sibworks program from Siblings Australia.

The Holiday Zone from Li-Ve Tasmania The Holiday Zone offers fun, inclusionfocused activities for children living with disability and activities and peer support

for siblings of children living with a disability. livetasmania.org/ holiday-zone Sibling Support at Irabina Autism Services (VIC) Designed to be fun and engaging, the sibling support program provides opportunities for open discussions about the good and the challenging parts about having an Autistic sibling. The program focuses on normalising the experiences and feelings of children growing up with an Autistic sibling with the input of psychologists and an Autistic young person as an additional support.

SNUG Retreats SNUG (Special Needs Unlimited Group) provides retreats for families caring for a child with a rare disease. These camps offer respite and support networks, allowing families to enjoy a holiday together away from the demands of their caring roles. The retreats are hosted at least four times a year and there is a focus on identifying and celebrating the skills and strengths of ALL family members – parents, children with special needs, and their siblings. newcastle.edu.au/ research/centre/fac/outreach/snug

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GETTING THE RIGHT SUPPORT

HO W TO : Find the right SUPPORT WORKER FOR YOUR CHILD With realistic expectations, thoughtful discussion points, and a strengths-based mindset, you’re much more likely to engage a support worker who really works for you and your child’s needs.

F

inding and engaging a support worker can seem like a daunting task when you already have so many responsibilities. The mere thought of advertising, interviewing, and hiring someone might make you feel like you’re over it before you’ve even begun.

In fact, a Source Kids survey of 102 parents showed that over 40% of respondents find it hard to even define what they want in a support worker.

So how do you determine what kind of person is the best fit for your family, and where do you start with getting that person on board? What characteristics are important, how do you know you can trust them, and how can you ensure the relationship is a success?

First, ask yourself these three questions Pieta Manning, State Manager for Victoria at Mable (mable.com.au), a two sided online community for independent support workers, says that before you even think about connecting with a support worker, you should know the answers to these three questions: 1. What is the support we are looking for?

What, where and when?

2. Who is going to be the best person to provide this support? Are they young, old, energetic or calm?

3. What are the outcomes we want from this support? What skill will be learned, what new experience?

2 4 SO U RCEKI DS .CO M . AU

“Good support for a child does not happen in isolation but as part of a whole family dynamic” Pieta says. “For parents who may already be experiencing carer fatigue, it’s important to take a step back and look at how having support can really help them and their family. You shouldn’t have to change everything about your life to fit in with a support worker. Instead, you should be able to engage someone who fits in with your family’s values and needs.”

This front-loaded thought process is, Pieta says, what makes support worker relationships successful. “Once you have identified these three important things, you can apply them to the profile of any support workers you’re considering, and immediately rule in certain people and rule out others. You can be really clear with potential support workers about what you want from them, what your expectations are, and also open the discussion about how they can contribute to creating a successful relationship.

And, says Pieta, this process can also help remove the sting from realising that there will always be people who just aren’t suited to your family. “You’ll understand why a certain person isn’t going to fit, and you can communicate this clearly.”

S TA RT S I M P L E Looking at your child’s NDIS goals is a good starting point. Even a broadly worded goal like “being more confident

and familiar with the local community” can be simplified into bite-sized mini goals.

In your mind’s eye, you might be picturing your child confidently striding around the neighbourhood, making eye contact and saying hello to everyone he encounters. But what’s that look like on a micro-level, with an achievable pathway that your child can work on with a support person?

“Choose one thing to start with,” Pieta says. “If your family has a dog, you might want to find someone who can go with your child when they walk the dog and help them to map your neighbourhood, learning road safety and local landmarks.

If your child would like to join a local sporting club or social group, perhaps you could choose a support worker with the same passion, to give them some basic sports skills or help them practice the social skills they will need to be able to join the group successfully.”

Start simple, small, and specific.

Don’t underestimate the power of a small

I N A S S O C I AT I O N W I T H mable.com.au

Hot buttons

Try to approach the finding and decision-making process with an open mind. Past negative experiences can be hard to overcome, but instead of thinking about the kind of person you don’t want, think about the kind of person you do want. You’ll know what your non-negotiables are, and you can make these clear from the start.

Here are some of the things that can be important individual choices for choosing a potential support worker: • Non-smoking • Comfortable and friendly with pets • Level of experience with medical needs • Confidence with medical equipment • Training in how to care for physical needs • Current first aid certificate • Good grasp of what constitutes an emergency, and what to do • Understanding and support of cultural, religious, and lifestyle

achievement – a lot of little triumphs will build your child’s confidence and encourage them to try bigger and more difficult things down the line.

For a child with complex physical or emotional needs, it can be challenging to translate goals into simple actions. But the clearer you are about what will most benefit your child and help them to reach their goals, the clearer you’ll be about the support person you are seeking.

A M AT T E R O F T R U S T Many parents feel uncomfortable leaving their child with a support worker, and this anxiety can be one reason that finding an appropriate person is a struggle. Trusting your child with a support worker can feel like a leap of faith – one that parents are understandably wary of taking.

On websites like Mable.com.au, where you can find and select from thousands of independent support workers who all have police and reference checks, you can also transparently see the ones that

have the correct working with children check for their state. Just as important is the opportunity to connect with a worker that you feel comfortable with, to have the chance to speak directly about your child’s needs and your expectations.

Or you can read reviews that they have received from their previous clients.

This is often hard to do when dealing with traditional services so being able to choose and manage who provides support to your child will give you a lot more choice and control.

If you are really struggling to connect with a support worker you could also look in your local community to see if someone you already know might be a good fit with your child. Is there a relief teacher at your child’s school, a friend’s older son they look up to, a neighbour passionate about the same sport, or a professional connection you have that might transform into a support worker role? “While not everyone wants to be a disability support worker there are a lot of people interested in supporting someone

differences

in their local community” says Pieta “and Mable provides the platform and support for this to happen in a transparent way using NDIS funding. They can simply invite them to the Mable website and we’ll ensure all the necessary checks and processes are carried out before they can provide support.”

INVESTING IN THE FUTURE When you’re engaging a support worker, you’re looking for a genuine connection that will, hopefully, lead to a longer-term relationship. It can take time and effort on everyone’s part to build this up, including you, your child and your support worker. You might want to start off with a few “trial sessions” initially at home with your child while you are there to observe and ensure that your child feels comfortable and confident with them. You could start with shorter I SSU E 26 | AU T U M N 2021 2 5

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GETTING THE RIGHT SUPPORT

sessions to get to know each other and then gradually increase the length or scope over time. It’s important to share your child’s challenges and goals with your support worker so they understand how they can best contribute.

“The benefits to really connecting with a support worker, and building a trusting relationship with them, are huge,” says Pieta. “Over time, what started as a basic relationship might grow into a level of trust where your support worker can accompany your child to new activities, for example, which helps grow your child’s independence and shows them their own capabilities to manage their own life.”

And isn’t that what we all want for our children – to live as independent and fulfilling a life as possible? “Support workers should enhance your child’s life, build on your child’s strengths, and be a useful part of the toolbox that helps them achieve their goals,” says Pieta.

Va n es sa ’s STORY My son Gus (13) has autism. While he does quite well at school, he finds organising himself, communicating and generally stepping out of the safety of home challenging. We advertised for a support worker to provide life skills coaching for Gus, with an emphasis on supporting him to develop systems, skills, and confidence in a way that worked for him and was consistent with his personality and values. We found and connected with Sophie, an independent support worker on Mable. She has a background in speech therapy and

a bi ga il ’s STORY My son Micah (13) has Down

as a teacher aide. Sophie comes

Syndrome and is autistic, and this

for two hours, two to three times

can be a challenging combination

a week, and works with Gus on a

to find a support worker.

range of developmental goals. In

He loves going to the local park and

three months, Sophie has done

watching the birds, and he would

Questions to ask potential support workers during a “meet and greet”

a great job in establishing trust

do this all day long if he could! I

and a good partnership with Gus.

decided that I wanted a support

They work independently and

worker who could accompany

set their own agenda based on

him to the park and help keep

what’s happening in Gus’s life.

him safe there, as he is at risk of

We’ve enjoyed seeing Gus become

absconding. I advertised for a

• What’s your understanding of this

more confident, independent and

male support worker to fill this role

support worker role and the needs

resourceful. The other day Sophie

and interviewed several people

related to my child’s disability?

and Gus were working on flash

before settling on Daniel, who

cards as a study technique for his

is a university student studying

science exam. Sophie explained

physical therapy. Daniel comes

that it was one of the study

once a week for four hours. They

experience you’ve had as a support

techniques they were going to

have developed an amazing

worker, and how you handled it?

test to find out what worked most

rapport and Daniel has instituted

effectively for Gus. This kind of

a number of things that have

support is exactly what Gus needs,

extended Micah’s interests. They

not only to achieve the right result

travel to different parks in the area

for him in his science test, but to

and log the birds they see there,

learn the skills which will enable

they go to the library and look at

this specific scenario if it were to arise?

him to reach his potential in the

books about local birds, and they

(Give an example of something you’ve

HSC and University (if that is what

take photos of unfamiliar birds or

experienced with your child.)

he decides to do).

birds with interesting colouring

• What skills do you have that you think will be valuable for the role?

• Can you tell me about a stressful

• What are some of your other skills or interests you might like to share with us?

• What would you say your friends like about you?

• Can you tell me how you would handle

and print them out for a special scrapbook. When the weather is

It’s okay to say no

bad they watch documentaries

You aren’t obligated to accept the first support worker you find, says Pieta.

Micah to have another adult who

“It can take a bit of time to find someone who is the right fit. If you or your family

encourages his special interest,

aren’t comfortable with someone, listen to that feeling. Don’t feel like you need to take whatever you can get.” If the support worker is not going to be suitable or if

about birds. It is so great for

and it gives me a great break from the bird-related chatter!

things don’t work out as you expected, be prepared to give honest feedback.

By Katherine Granich I SSU E 26 | AU T U M N 2021 27

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D elivering a dif ficult diagno sis:

A PARENT’S PERSPECTIVE Nearly all of us will remember the moment our child was diagnosed. This is what we want doctors and specialists to know.

O

n August 12, 2013, my five-week-old daughter was diagnosed with cystic fibrosis. I acutely recall the moment I heard this surprising news and the feeling of “Everything has changed.”

I’d worked in healthcare in the field of chronic disease for almost a decade. And yet, it had never occurred to me that this would one day be me. Is that bad? It sounds so callous and arrogant looking back, but I never really thought about it.

Other people’s kids might be sick. But not mine. Not my baby.

I remember our messenger’s phone call like it was yesterday. His delivery was poor and his suggestions for next steps ridiculous. Turns out Google is not the best place to direct parents for information on cystic fibrosis (or any other complex medical condition).

Fortunately, a second messenger came on his heels. This physician took my hands and said the words that have shaped my outlook for the past seven years. “Your daughter can live a long and full life. It’s my job as her physician and yours as her parents to help make that happen.”

In that moment, she reached through my wall of tears and enabled me to hear – to really hear – the rest of her message.

She acknowledged the uncertainties associated with cystic fibrosis and shared the scientific advancements that had already occurred and that were planned for the foreseeable future. “There is never a good time to be diagnosed with a chronic disease. But if there ever was,

3 0 SO U RCEKI DS .CO M . AU

that time is now.” She gave us the history.

She gave us the science. And she gave us hope. She also reminded us that we are not alone. We are in this together.

As the Founder of Paint Her in Color, a web site in the US, that offers emotional support to parents of children with special health care needs, I’ve encountered countless families just like mine. Nearly all remember the moment their child was diagnosed.

They remember where they were. They remember the words that were shared.

And they remember the moment their worlds separated into “before” and “after.”

One of my biggest passions is helping care teams deliver paediatric diagnoses in a supportive, compassionate manner.

Here are my top 10 tips for delivering a difficult diagnosis.

1

2

B E P R E PA R E D

It sounds like a no-brainer, but take the time to prepare for your conversation with us. How will you explain the diagnosis? What tone and body language will you use? What questions do you anticipate we will ask?

Where will you encourage us to go for additional information? How will you realistically instil hope?

Taking time to consider these questions can help you establish yourself as a credible source of information and begin to build a family’s trust. It can also help you feel more comfortable and confident in your delivery of the news.

M I N I M I S E I N F O R M AT I O N O V E R L O A D

Families need time to process life-changing news, especially if it is unexpected. When preparing for your first interaction with parents, consider what information you absolutely must convey and what can wait for another time.

DELIVERING A DIAGNOSIS

3

A C K N O W L E D G E O U R E M OT I O N

If we parents are overwhelmed emotionally, we may struggle to digest what you are telling us. Resist the urge to fall prey to the checklist. Look us in the eyes and ask how we are feeling. This guidance also holds for our interactions over time. As parents, it is difficult to clinically manage our child’s condition if we struggle with psychosocial barriers, such as depression, anxiety, or poor social support. Help us recognise these barriers and provide resources to help us overcome them.

4

WAT C H F O R N O N V E R B A L C U E S

I came armed with a prioritised list of questions for my first appointment with my daughter’s care team. I brought a highlighted copy of the Evidence-Based Guidelines for Caring for Infants and Preschoolers with Cystic Fibrosis.

At face value, I was an informed, activated caregiver who was ready to take my daughter’s condition by the horns. But inside, I was a wreck. Our physician recognised my blank expression and my constant struggle to hold back tears within minutes of our meeting. By taking the time to acknowledge how I was feeling, she helped establish trust and moved me closer to the point of being able to hear what she was saying.

5 SIT WITH US

I distinctly recall how my daughter’s physician sat next to me in our first interaction. She didn’t stand over me.

She didn’t sit behind a desk or even across from me. She sat by my side and spoke to me as if we were equals.

And in a sense, we were. We were both equal partners in my daughter’s care. At one point, the physician took my hands and spoke to me “mother to mother.” While physical touch is not appropriate for everyone, simply revisiting how you sit can help form a sense of partnership with parents.

I SSU E 26 | AU T U M N 2021 31

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DELIVERING A DIAGNOSIS

A N T I C I PAT E D I F F E R E N T R E S P O N S E S

If more than one parent or caregiver is present, we might have different responses to the diagnosis. One might respond in a more analytical manner; the other might be more emotionally expressive or even completely silent. Take the time to acknowledge and speak with both of us, even if one has been more vocal than the other. Remind us that there is no one “right way” to respond to difficult news, and that we are both important players in our child’s care.

9

8

POINT US TO TRUSTED SOURCES

When I was told to Google my daughter’s condition, I quickly learned that 1) Decades ago, people with cystic fibrosis didn’t make it to elementary school; 2) Some people with CF like to post videos that document their bronchoscopies; and 3) Nurses used to kiss babies and declare a child who tasted of salt to be “not long for this earth”.

Contrast that with the home page for the Cystic Fibrosis Foundation, which states that “People with CF are living longer, healthier lives” and “Here’s what you can do to manage your daily care.”

Most medical, developmental, and behavioural health care conditions have national foundations that provide credible information and support. These can be excellent follow-up resources for parents.

OFFER WORDS OF HOPE W H E R E A P P RO P R I AT E

Many of us parents will grieve the type of childhood or overall life we had envisioned for our child.

Emphasise where we can find hope.

Is science advancing in this area?

Are future therapies coming down the pipeline? It is important to be authentic and to avoid offering false hope. But to the extent that is realistic, help us set high expectations about what our child is capable of vs. focusing on what a child will never be able to do.

10

7

ADDRESS THE ELEPHANT IN T H E RO O M

In many diagnosis conversations, there is an elephant in the room with you.

Parents might be wondering “Did I cause this to happen?”, “Will my child be able to go to school?”, “Have a job?”, “Get married?” or “Have a family?” To the extent that you can, proactively address these elephants in as authentic, yet hopeful a manner as possible.

Even if we aren’t asking you these questions, we are likely thinking them.

LET US KNOW WE DON’T HAVE TO GO IT ALONE

Receiving a difficult diagnosis can be very isolating. Remind us that you (or a specialist) will be partnering with us to help us manage our child’s condition. Point us in the direction of local support groups or peer mentors who can relate to our day-to-day routines and provide realistic sources of hope. Remember that for many of us, the emotional part of managing a special health care need is often as challenging as the clinical. If we know we don’t have to walk this road alone, we are one step closer to being able to successfully manage our child’s care.

While a diagnosis discussion may be just one encounter of many in your day, it is a moment that we parents will remember forever. You don’t have to be perfect. Just be human and treat us as real people who have real emotions and are trying our best.

In doing so, you can build trust and begin to form a partnership for optimising clinical and emotional outcomes in families.

By Laura Spiegel

For 12 years, Laura Spiegel partnered with physicians and psychologists to help people with chronic illness lead happy and healthy lives. Her professional and personal worlds collided in 2013 when her own daughter was diagnosed with cystic fibrosis. Laura founded Paint Her in Color in the US after realising that emotional support for parents like her was hard to find. Visit paintherincolor.com to find out more and read more of Laura’s writing.

I SSU E 26 | AU T U M N 2021 33

Dietetics

for children Dietetics is about supporting children’s healthy growth and development through good nutrition.

A dietitian can help your child function at their best by ensuring their growing bodies and brains are supported with optimal nutrition. They work with you and your child to make healthy dietary choices and assisting you with issues around food and diet, such as allergies, weight management and gastrointestinal disorders. They can also support families with enteral feeding. Our dietitians are experienced in working with children who have complex needs, developmental delay or disability (including autism) or have been through trauma.

Nutritional advice — making healthy choices for your child’s needs and growth stage Food allergies and intolerances — understanding your needs and which foods to avoid

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Just some of the benefits include no wait times, no travel costs, and ensuring you receive continued support during difficult times.

Fussy eating and food aversions — developing a healthy relationship with food and improving dietary variety and nutritional intake Nutrient deficiencies — such as iron deficiency Weight management — support for children with weight concerns (over- or under-weight) Gastrointestinal disorders — improving gut symptoms related to food Nasogastric and PEG feeds — management and weaning Creating positive mealtime experiences

For more information call 1800 436 436 or visit growingearlyminds.org.au Servicing North West and Western Sydney, or anywhere in Australia via telehealth.

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I SSU E 26 | AU T U M N 2021 35

Updates from our

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s what they’ve u ll te e m o rs u 21.

Our awesome fo eir plans for 20 th d n a ly te la to been up

Riley Saban This year started off with a more positive vibe despite feeling a little disappointed in January just before my 18th birthday.

I wanted to celebrate my birthday in Sydney, unfortunately there was a big Covid outbreak which put a stop to my plans. We were planning to party all night long but we had to postpone the trip to later in the year. Even though my birthday plans changed, I ended up having a wonderful 18th. I had a small get together at the local pub with my family and friends. I became a bit emotional after I read my cards and letters from people who have supported me at school.

During the school holidays I have been really busy writing my first short novel. Sorry but I’m not sharing too many details until it is finished!

I am fortunate to live in a Covid safe area at the moment and I was able to start year 12 back at school. So right now, I am getting prepared for my HSC exams. In multimedia I have to produce a folio about an app I am going to develop. After this is completed and submitted I hope to make the app available to the public one day.

B rydi Sa ul

Adding more to all this exciting news, I can happily announce that PolySpine will have a booth at the Source Kids Disability Expo in Sydney in early April. PolySpine is the modular support system I had a hand in creating, to support people with disabilities to participate in various physical and recreational activities.

I will be floating around the expo in my new power wheelchair, so come and say hi. We would love to explain the possibilities of PolySpine so come and see our booth, our product is really cool…

I look forward to seeing what else this year brings.

“With the right tools, you can achive anything” 3 6 SO U RCEKI DS .CO M . AU

Brydi has been keeping very busy the past couple of months... she competed in a QLD relay race earlier in the month of December... she did really well! Brydi also attended the wheelchair sports NSW/ACT junior wheelie camp in Sydney and had such an amazing time doing heaps of different sports! She had a go at wheelie AFL, wheelie basketball, lawn bowls, kayaking, archery, and heaps more! Was a jam-packed weekend! She even had a superhero dress up day at camp and chose Harley Quinn and looked amazing!

Christmas was a quiet one for Brydi. She spent the day at home with family. We did however just come back from a trip to Canberra and Batemans Bay! Brydi LOVED the surf and as you can see, we came up with an easier way to get her over the sand dunes! Brydi learnt to body surf and boogie board and had an awesome time!

We even visited the Parliament House in Canberra! Was awesome to see the different rooms and hear all about Jordon Steele John, a member of parliament who lives with a disability, who is making huge impacts!

Maybe one day we will see Brydi in parliament too?

THE A TEAM

Kai Seymon

Finley Coll

I hope everyone has started back at school ok. I am relieved to be back at school this year. Being in Melbourne meant that I spent most of 2020 at home and not at school which I found hard. It made me appreciate school more for sure. Highlights for me so far for 2021 have been going on ESA camp with my friend Seth to Phillip Island. It was so fun!

I also got to go bowling with my friend Kyle as well as also started with Kyle in an ALL abilities basketball team last week. I also had a visit from baby Elora and I got to have a hold.

She gave me big smiles and I really liked holding her. It was pretty cool also to do a shopping centre pop up for 10 days with our Kaiko Fidgets range. I sold lots of my fidgets and had lots of lovely conversations with people. I am really looking forward to learning guitar this year and playing basketball.

I have a few things planned for 2021.

I really want to go even bigger this year with my Disability Awareness Week plans and have the students and teachers in wheelchairs for the whole day. I’m even hoping to get some local Sunshine Coast politicians on board this year.

I also have a big operation happening this year that will see me out of action for a while. I’m pretty nervous about it but I’m hoping that after the operation and with lots of hard work with my physiotherapist I will be up walking again which I haven’t been able to do for about the last 6 months. I would like to be able to spend some time out of my wheelchair.

I’m also planning on attending the AGOSCI conference in Tasmania this year. It’s the first time I’ve been and I’m really excited to meet other AAC users like me.

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Helping your child to

‘Cross the Midline’ An overview of this important skill and some ways to help your child.

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f your child has had occupational or physiotherapy you may have heard their therapist talk about ‘crossing the midline’. Let’s go through what they’re talking about, why it’s important and how you can help your child develop this important skill.

What is it?

Draw an imaginary line down the middle of your body, starting at your head – this is your midline. Crossing the midline with our hands/arms involves the coordination and communication of both the right and left sides of the brain; it is something the majority of us do every day without even thinking about it and it’s an important developmental skill children need to acquire to assist with writing,

4 0 SO U RCEKI DS .CO M . AU

cutting, sport, tying shoelaces, and more.

As ‘typical’ babies grow they will usually acquire the ability to cross the midline through developing body awareness and play such as when they reach for toys and other objects. Children with neurological impairments and physical disabilities may find this more difficult to master.

Why is it important?

Difficulty in crossing the midline can impact children both neurologically and physically. It’s a core activity that helps build your child’s neurological pathways and is key to the development of other movement and cognitive skills.

Writing across paper at school may be difficult for example, visual

tracking and reading across the page may also be affected and your child may experience mental fatigue with the increased effort required for the left and right hemispheres of the brain to communicate.

Crossing the midline also helps your child to develop a dominant hand which is important in being able to carry out fine motor skills and learning to write.

If both hands are being used equally (because your child is not reaching across the body with the opposite hand for example) a dominant hand with its additional strength and dexterity may not emerge.

When a child can effectively cross the midline, they will also have an adequate level of core strength which allows for

THERAPY

trunk rotation when carrying out an activity (getting dressed, for example).

What do delays look like?

There are numerous ways a child may struggle when they have difficulty crossing the midline. Other factors may be at play and not all children are the same, obviously, but look out for the following: • E ngaging in tasks on one side of the body only (i.e. only ever reaching for an item on their right side with their right hand) • Difficulty zipping up bags • Difficult putting shoes and socks on • Sitting awkwardly at their desk and twisting their body to write • D ifficulty kicking or hitting a ball across their body • Difficulty reading from left to write • P roblems using cutlery in the appropriate way • Not establishing a dominant hand • D ifficulty sitting cross-legged or getting their body into a cross-legged position.

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If your child has difficulty with skills involving crossing the midline make sure to discuss your concerns with your GP, paediatrician, or occupational therapist or physiotherapist.

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F I N E M OT O R T H R E A D I N G F O R B I L AT E R A L E X E R C I S E Any activity that encourages using both hands is a great tool for bilateral therapy. Think fine motor skills including cutting paper or threading objects! Rainbow Fun’s sweet little Birds Wooden Beads contains a beautiful assortment of colourful wooden beads and charms to inspire kids’ creativity and is a great motivator for using both hands. RRP $17.99 rainbowfun.com.au

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Living with e s a e s i D e r a Ra

Six-years-old and one of only six in Australia, Frankie Gleeson sure is special.

F

rankie lives with a rare An MRI was booked to determine the condition called Acrodysostosis extent of the hydrocephalus and what type 2, which her mum, intervention would be required before Kymie, often refers to as like the family met with a genetic specialist a Pandora’s Box, because you never know who noticed that Frankie’s hands and feet what challenge the condition will bring were a different shape and size. on a daily basis.

“It’s absolutely heart breaking to Caused by the mutation of two think back to that time when the words genes, AcroD affects Frankie in a “syndrome or condition” casually fell number of ways – she has developmental out of the geneticist’s mouth at our first delays, level 2 autism, sensory appointment,” she reflects. processing disorder, a speech delay, “The geneticist explained the obsessive compulsive disorder (OCD), condition to the best of his knowledge, a ventriculoperitoneal (VP) shunt to which I can only assume was from a rare support hydrocephalus, food aversions, disease text book or manual, and how allergies and more.

Frankie might be affected, giving us a NSW-based Kymie and her husband photocopied pamphlet that was written in Michael were first made aware that their the 80’s or 90’s and said ‘try not to precious daughter had a “Dr Google”, as it will “Try not to problem at six months old. only upset you’.

An ENT specialist referred “We were very lost, “Dr Google”, Frankie to the Craniofacial heartbroken to an extent as it will only and in disbelief this could Unit for assessment by a upset you” plastic surgeon because of be happening to our low nasal bridge, which precious baby. It was was assumed cosmetic. a rollercoaster of emotions, I think “This is when there were first concerns I cried every day for 6 months. about the size of Frankie’s head and its “We didn’t tell anyone, not even my rapid growth, and fluid on the brain was parents for the first few months, as suspected,” Kymie recalls.

I didn’t even know how to explain it to anyone. I was completely lost, riding a wave of emotions, trying to still be a firsttime mum to my baby, and ensuring her needs were met, running a business with my husband and trying to continue life.

“I blamed myself, I thought that I had done something in the pregnancy to cause the condition, eaten something, been exposed to something. I’d failed to keep our precious baby safe.”

They were told Frankie was the only child with the condition in Australia and New Zealand.

4 8 SO U RCEKI DS .CO M . AU

The years since that moment have been a huge journey of learning and acceptance as well as celebration at the arrival of Frankie’s little 2-year-old sister Georgia.

“My mother bear instincts just kicked in, and I became a warrior for my child, reading, researching and looking into every type of early intervention I could start her in, speech, physio, OT, dieticians, specialist paediatricians and so on.

“Michael created a Facebook page in the hope of finding other families and patients. We couldn’t accept that there was no one to talk to, no one that could help us understand what would happen to our baby girl.

“Within a few days of the page being created we had one family asked to join from the USA, and a week later a family from the UK. Within a year we had 30 families and 5 years on we have over 100 families, 6 now in Australia. We have created our own specialist team!”

Kymie was proud to see Frankie start at her mainstream school this year following early intervention at a local primary school and daycare last year.

But there are always fears.

RARE DISEASE

THE FIGHT “What will happen if she never really situation, the Gleeson’s established the speaks,” Kymie questions. global charity Acrodysostosis Support “Will she even know how to say her and Research, which is dedicated to name? Get a job? Be able to live on her winning grant money to fund own? Find or be in love? Will she be a research grant into the “why”. bullied or hurt? What if we die, and who Kymie also finds solace in will take care of her?” updating Frankie’s Facebook Page There are so many unknowns, so “Little Frankie BIG World” – telling Frankie’s family tries not to think too Frankie’s stories and sharing her far ahead and simply enjoy the time stories and achievements to her they spend with their little girl who loves loving followers.

Peppa Pig and bubble-blowing.

While everyone’s special needs “She’s a happy and journey is different, she loving little girl, but we do wants to remind others “There is have deal with meltdowns that you are never alone, someone and behavioural challenges, no matter how rare somewhere your child’s disease or like most children who have a developmental delay, in the world condition is. there are many times of “There is someone that knows frustration for her due to somewhere in the world something.” that knows something. her speech delay and the traits that come with ASD Join a support group, and SPD. or start a support group, create a “There is no specialist or miracle cure website and blog, others will find in the pipeline. And we don’t want to get you,” she advises. ahead of ourselves with too much hope.

“The AcroD Family has been our “We want a happy healthy child saviour, and to know when Frankie first and foremost, and for her to be the is ready to understand who she is best version of herself, and putting any and what her conditions is, she will pressure on her and making unrealistic have friends and others just like her. future plans for her doesn’t feel like She will never feel alone or isolated the right thing to do or in her best because of AcroD.” interest. We accept who our child is, her disabilities and her abilities. And hope

By Rachel Williams she can grow into a person who can be independent and be able to self-care at acrodysostosis More info... some stage in the future. “ Along with other parents in a similar acrodysostosis.org

Against Rare Diseases

F

rom the science to the social support, we speak with two women fighting to help those with rare diseases across the country.

A condition is classified as a rare disease if it affects less than 5 in 10,000 people. For the two million people across the country in that category, the advancement of genomics is proving a game-changer.

Australian Genomics Health Alliance Managing Director Tiffany Boughtwood says about 80 per cent of rare diseases are of genetic origin, which makes genetic analysis – and particularly genomics – a powerful tool in the diagnosis, management and treatment of rare diseases.

“Depending on the specific rare disease, genomic testing can provide a genetic diagnosis in around half of patients, however we still have a lot of research work to do to increase our understanding of rare diseases and their genetic causes to end the diagnostic odyssey in those patients who haven’t yet found a genetic answer to their condition,” Tiffany explains.

“There is an incredible rate of innovation in genomic technologies and applications, that have the potential to improve both our health system, and the experience and outcomes for I SSU E 26 | AU T U M N 2021 4 9

At a local level, two parliamentary inquiries are underway into areas affecting those with rare diseases across Australia.

The Standing Committee of Health is looking into approval processes for new drugs and novel medical technologies, while a Joint Standing Committee is inquiring Australian patients and families. into the National Disability “For example, reproductive genetic Insurance Scheme. carrier screening empowers couples The inquiries follow the release last thinking of having kids, or early in year of the National Strategic Action pregnancy, with knowledge about Plan for Rare Diseases, which Rare whether the children are at increased Voices Australia CEO, Nicole Millis, chance of having a rare disease. says is the first nationally coordinated “The application of genomic testing effort to address rare diseases in to babies and children in the acute Australia. The Action Plan consists of care setting has been shown to have three pillars focusing on “Awareness transformative impact on how these and Education”, “Care and Support” desperately unwell kids are cared and “Research and Data”. for; even when a genetic diagnosis For those with limited or no is not achieved.” information, treatments and support for Tiffany says emerging cell and their rare disease, major change can’t gene therapies are offering new hope come soon enough. to families living with rare diseases but Rare Voices Australia is the peak warns the fight to help those impacted body for Australians living with a rare needs to be coordinated from a disease and Nicole says that the biggest global perspective. challenges facing those affected by one “The full potential of genomics of the 7000-plus known rare diseases, in rare disease management will only is the struggle for a timely and accurate be achieved through the collective diagnoses and a lack of research. efforts of genomic researchers, health The Action Plan calls for investment care practitioners, diagnostic and data into all types of research related to experts, policy makers and governments rare diseases, including rare disease – and the patients and families with lived coding, data collection and registries, experience.” fundamental discovery research, qualitative research, pre-clinical testing and clinical trials.

“For many rare Emerging diseases, there are cell and gene a number of barriers therapies are to effective research and no active research offering new hope to families programs,” Nicole explains. living with rare “The reality is, diseases for many people, participation in a clinical trial may be the only way they can access treatment for their rare disease.”

Nicole says it is difficult to answer with any certainty which diseases have increased or decreased in diagnosis statistics because of limited data.

“In Australia, data for most rare diseases is not captured in either health information systems or registries.

“Additionally, there is no coordinated strategy to collect, measure, build and translate data that does exist.”

With rapid expansion in the areas of genetics and genomics, she says more rare diseases are likely to be diagnosed in the future.

“The Action Plan calls for a national rare disease workforce strategy that responds to current and future demands, including the impact of genomics.

The increasing precision of genomic technologies means that new diseases are being discovered regularly,” Nicole says.

“Gene and cell therapies, gene editing, genomics and precision medicine are all new technologies that are dramatically shifting research paradigms for rare diseases as well as providing much future hope. To fully realise the potential of these new technologies, the Action Plan calls for the development of a national research strategy for rare diseases to keep pace with genomic advancements, precision medicine and innovation.”

Rare Disease Day takes place on the last day of February annually, with events taking place in many areas to raise awareness among the general public and decision-makers about rare diseases and their impact on people’s lives.

By Rachel Williams

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The MagnaReady shirt at EveryHuman has put a subtle twist on a wardrobe staple with this “button-up” dress shirt which includes their patented frontplacket magnetic closures. It lets kids get in and out of their shirt easier than ever and is sure to impress wherever they go, with their confidence of independence soaring! RRP $80.95 everyhuman.com.au

Every pair of NIMCO

1001 Orto is a fun

Boston School is

footwear is custom

and colourful

a popular boot

made and must

supportive boot

for school-aged

be measured by

for little ones just

children and

a professional to

learning to stand

includes arch and

ensure it is made to

and walk and is part

ankle support.

fit. ‘Kate’ is one of

of the first steps

Also available in

the many designs

range for little feet.

alternative colours.

that your child is

wellandable.com.au

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sure to love. wellandable.com.au

HANDS-FREE SHOES FOR FREEDOM Nike’s first-ever hands-free shoe has arrived! The Go Flyease makes it easy to get in and out of, as the shoe has a smooth motion with a bi-stable hinge that enables the shoe to be secure in fully open and fully closed states. Step down on the “diving board” to click into a locked position – then pop back up by stepping on the “kickstand” on the heel. RRP POA nike.com/au

I SSU E 26 | AU T U M N 2021 53

The services and initiatives in place to help young adults with disability find work

Transition to the workplace

T

here are milestone moments in the lives of all our children – and leaving school to transition into the workplace ranks up there with one of biggest and scariest – for all involved! For most families, despite the magnitude of the transition, things generally have a way of working out and children fly the nest, going off to make their way in the big wide world (some a little later than others it has to be said).

When your child has special needs, however, things are not quite so simple.

The structures that are in place to support our children as they make their way through childhood all shift and there are a whole new set of acronyms, support services, processes and procedures to get to know. Before you dissolve into complete panic at the thought of it all, it’s important to know however that there ARE supports out there – you, and your young adult child, will not have to ‘go it alone’ – the NDIS for example is

5 6 SO U RCEKI DS .CO M . AU

a lifelong support system and there are other initiatives in place specifically to aid young people with a disability as they strike out to join the workforce. Here are some things to know and things to consider: Start early It is a good idea to start thinking about and planning for life after school before the last year. Engage with the school guidance or careers team as early as you can. Ensure you contact the school and keep up to date with employment and transition events, options and planning. Work as a group to build a plan that is tailored to your child and then begin accessing supports to achieve this when it is practical. This process could start as early as year 7, to ensure study planning aligns with career or further study goals. The NDIA has a really useful booklet on their website called Let’s Talk About Work which covers planning for employment,

exploring employment goals, planning for leaving school and finding employment providers.

School Leaver Employment Support This is the specific part of the NDIS set up to support young adults as they transition from school into the workplace. According to the NDIA – “the NDIS is responsible for funding supports to assist people with disability to prepare for, and take part in work, where the person has work capacity but needs some more support before receiving ongoing employment support through existing systems.”

The supports help participants move from school to work and are available in the final years of school and directly after leaving school (usually up to the age of 22).

Funding is made available through the capacity building category in an NDIS plan – it can be used with

SUPPORTING YOUNG ADULTS

TERTIARY EDUCATION Studying after school is a real option for many young people with disabilities – and extra skills will open up potential employment avenues. Universities offer a wide range of assistance including support with note taking, assistive technology, alternative print formats and participation assistance. Other options include TAFE diplomas and certificates.

Job Access Created by the government, this is a national hub for information on employment and workplace questions for people with a disability and employers.

The website has a range of information such as: • Financial support for workplace modifications and wage subsidies • L inks to education and training programmes • Recruitment tips for applying for a job • I nfo on rights and responsibilities of both employees and employers The Job Access website is jobaccess.gov.au or call 1800 464 800

providers who deliver school leaver employment supports that help young people prepare, look for and gain employment focusing on capacity building, developing skills, independence and confidence to work. Some of the skills development a young person might engage a service provider for may include money management, time management, communication skills, work experience, job ready skills, travel skills and more.

Disability Employment Services (DES) A School Leaver Employment Service (SLES) provider will work with a participant to help them meet the access criteria for Disability Employment Services (DES) and will work with them to transition into using the service of a DES provider. The role of a DES provider is to support a person with disability who is job ready to find and keep a job.

DES providers are a mix of large, medium and small, for-profit and not-forprofit organisations that are experienced in supporting people with disability as well as providing assistance to employers to put in place practices that support the employee in the workplace.

There are an increasing number of service providers to choose from. The NDIA has some useful suggestions for questions to ask when you’re making your choice of who to work with in its Looking for Work booklet:

• W hat supports would you recommend based on the employment skills I need to develop?

• Do you provide one-on-one or group support?

• W hat qualifications do your staff have?

• W hat types of businesses or companies have you placed people in and what type of jobs are they doing?

• W hat range of jobs do you offer, and would I have the opportunity to learn new skills while I work for you?

• How many of your participants have gone on to get a job?

• How long do most of your participants stay in a job for?

To find a list of Disability Employment Service providers in your area, visit the jobactive website at jobsearch.gov.au.

Australian Disability Enterprises (ADEs) ADEs provide another pathway into employment for people with a disability. An ADE is a not-for-profit organisation, which supports people with disability to engage in a wide variety of work tasks such as packaging, assembly, production, recycling, screen printing, plant nursery, garden maintenance and landscaping, cleaning services, laundry services and food services.

ADEs also offer similar working conditions as other employers and an opportunity for people with a disability to contribute and connect to their local community.

Life skills programs If your child is unable to participate in the workforce, they may want some real satisfaction, enjoyment and community in a program that will help to guide them towards being more self- sufficient and give purpose to their days. As with everything, you are going to need to do your research to and one that is a good fit.

VOLUNTEERING Unpaid volunteering work can be a route into a paid position where a person with a disability can increase work skills in a less formal setting. It’s also a great way of trying out a few different fields and also can help build personal and work relationships.

I SSU E 26 | AU T U M N 2021 57

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g n i r e h t a T he G P OW ER ED BY

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In addition to being inspired and uplifted by Karni, guests will receive a three course dinner, all beverages, a special gift for ever y attendee and some prizes on the night. Oh and of course the oppor tunit y to connect and enjoy the company of other amazing special needs mamas on the night.

T hursday 25 March, 2021 T IME: 6pm for a 6.30pm star t VENUE: T he Calile Hotel (Grand Room IV ), 48 James Street, For titude Valley DAT E:

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I SSU E 26 | AU T U M N 2021 61

Bathroom aids KEY T

Toddlers

C

Children

Y

Youth

A

Adults

An overview of the shower and bathchairs, and other accessories on the market to make bathroom time safe and simple for your child.

T C Y A

T C Y

T C Y

A

SHARKY

AVA N T I PA E D I A T R I C SHOWER TROLLEY

BEST SUITED FOR: 18 months to 16 years.

10kg to 80kg.

SPECS: Backrest recline, upright to full

BEST SUITED FOR: Up to 170kg.

recline of 140°, No tilt.

Height less than 150kg.

SPECS: Adjustable support - height.

KEY FEATRURES: • Compact paediatric size shower trolley.

NEW

RIFTON HTS (HYGIENE & T O I L E T I N G S Y S T E M) BEST SUITED FOR: 8 months to adult

KEY FEATRURES: All the great features and benefits of the Splashy in a bigger size. activerehab.com.au, medifab.com.au, specialneedssolutions.com.au.

• Hydraulic or electric height

years. Height: 76cm to188cm.

adjustment.

Weight: 1kg to 113kg.

• Mattress available in 40 different

SPECS: Available in 3 sizes – 1,2,3.

colours to suit your child’s preference.

Seat backrest recline, 5° forward to

This product allows for showering

25° backwards. Adjust support – seat,

in supine when shower chairs

backrest, height.

do not provide enough support.

KEY FEATRURES:

C

• Versatility of toileting, showering and

Y

avantinnvoations.com.au

bathing system all in one.

• Varied support options help clients maintain optimal positioning.

• The HTS comes in three sizes, each with a wide range of adjustment. As your child grows the chair can adapt, giving you years of useful service.

The HTS is a shower/commode chair that can be placed on the toilet or used on its own. activerehab.com.au, doability.com.au, medix21.com. au, specialneedssolutions.com.au, urgoform.com.au

62 SO U RCEKI DS .CO M . AU

T

A

BATHROOM AIDS

R AZ C AT BEST SUITED FOR: 5 to 18 years.

C

Max weight 115kg.

Y

SPECS: Recline and tilt Adjust support – seat,

A

backrest, height.

KEY FEATRURES • The depth-adjustable back provides growth capability.

• Very customisable.

• Has tilt and recline.

The Raz Caty is a fully custom shower commode, with options

ANATOMIC SIT T ‘STARFISH PRO’

C

for lateral supports, headrest,

Y

moulded seats and more.

A

activerehab.com.au

BEST SUITED FOR: 7 and above years.

1kg to 150kgs. 120cm to 200cm.

SPECS: Recline and tilt. Adjust support – seat, backrest, height.

KEY FEATRURES: T

• Easy positioning with mounting hardware for the harness which is

C

height and width adjustable.

• Strong stainless steel and aluminum

Y

construction.

A

C Y A

• Comfortable, pressure relieving cover material specifically designed for hygiene situations.

A combined shower and toilet chair

R I F T O N WAV E B A T H C H A I R BEST SUITED FOR: 1 and above years.

that has numerous, easy adjusted

1kg to 114kg, 76kg to 188kg. 3 sizes

configurations and a patented seat

available: small up to 34kg, medium

design that can accommodate the

up to 68kg, large 113kg.

most challenging postures. astris-pme.com.au

SPECS: Recline. Adjust support – seat, backrest, height. The backrest adjusts from flat to 75° in 6 increments. Back and seat angle adjustments at 0° 15 ° 30° 0° 15 ° 30° 45° 60° 75°.

N R S ‘ S E A H O R S E P LU S’

SURFER BATHER

KEY FEATRURES:

BEST SUITED FOR: 1 and above –

backrest angle allowing the caregiver free

suitable for adults with small stature.

use of other hand to maintain safety and

Max weight 50kg. Max height 135kg.

reassurance.

SPECS: Recline only.

• Full leg lower support with optional

Adjustable support – height.

calf rest with push button adjustment,

KEY FEATRURES

independently from the seat.

• A powered elevating bath lift

• Full range of components including head

which helps to minimise moving and

blocks, leg straps, calf rest, chest strap

handling risks for parents and carers.

(with or without lateral positioning).

• Holds a child securely in the seat as

The system offers a variety of bathing

they are lifted in and out of the bath.

and showering options with tub stand,

• Headrest, protective harnesses, and

This multi-purpose hygiene chair is

shower stand and a unique swivel tub

a pommel support the child.

height adjustable with four tilt-in-

transfer base that’s easily stored away

space positions and is suitable for

• Adjustable backrest can lie flat.

with foldable legs.

use under a shower, or as a toileting

activerehab.com.au,

astris-pme.com.au, doability.com.au, medix21.com.au, urgoform.com.au

chair. Available in small, medium

avantinnovations.com.au

• One hand adjustment easily adjusts the

BEST SUITED FOR: 5 to 18 years.

1kg to 152kg.

SPECS: Adjust support – seat, backrest, height.

KEY FEATRURES: • Simple push button locking tilting mechanism for ease of operation and security.

• Designed for use over most standard toilets. The seat can be raised or lowered for optimum use.

& large. astris-pme.com.au

I SSU E 26 | AU T U M N 2021 63

Custom | Flexible | Local We are a proud Australian company born from a determination to create functional, fun and user-friendly custom wheelchairs.

Using the latest technology our products provide freedom of movement, and open up a world of new territory for people living with a disability.

People who have had many wheelchairs in their lifetime will tell you that the right chair can give them a new energy, a new attitude, a new outlook. That’s why we place so much emphasis on getting the measure-up for your personal wheelchair right.

We boast a large range of wheelchairs, beach and all-terrain wheelchairs, accessories including cushioning and so much more.

Be in touch to discuss how Mogo will improve lifestyle, offer freedom and always be there for you.

mogowheelchairs.com.au

I SSU E 26 | AU T U M N 2021 6 5

KEY T

Toddlers

C

Children

Y

Youth

A

Adults

T

T

C

C

Y

Y A

L E C K E Y A D VA N C E D B A T H C H A I R

T

BEST SUITED FOR: 1 year to 18 years.

C

10kg to 72kg.

SPECS: 75cm to 135cm (backrest height).

Y

Available in 4 sizes – 1,2,3,4.

A

1 – age 1 to 5, 2 – age 4 to 9, 3 – age 8 to14

• Contoured seat with soft padding.

KEY FEATRURES

This multi-purpose hygiene chair is height

• Breathable cover, removable and

adjustable with four tilt-in-space positions

machine washable.

to help make showering and bathing easier.

• Adjustable hip and chest belt with

It is suitable for use under a shower, or as a

integrated lateral supports.

specialneedssolutions.com.au

SPECS: Recline and tilt. Adjust support –

• Extremely adjustable and customisable.

seat, backrest, height.

activerehab.com.au, medifab.com.au,

max weight 102kg.

KEY FEATRURES

for horizontal to 90°. Adjust support –

• Pelvic, trunk and head support.

BEST SUITED FOR: 3 year to 18 years,

seat, backrest, height.

4 – age 12 to 18. Backrest recline and Tilt

• Height adjustable legs.

SEAHORSE SHOWER COMMODE

toileting chair. activerehab.com.au

ARCHIMEDE S BATH L IFT BEST SUITED FOR: Up to 170kg.

Height less than 150kg.

SPECS: Adjustable support - height.

T

KEY FEATRURES • Stable, rigid frame bath lift for

C

people who struggle to get in and

Y

out of the bath.

• Great option for parents whose child struggles with mobility and/or balance but don’t wish to transition C Y A

to a shower chair.

• Can be used into adulthood.

Lower and raise a child in and out of the bath on the reassuring and comfortable rigid frame seat, using the battery powered hand control – without risk of carer injury. avantinnvoations.com.au

SPLASHY BEST SUITED FOR: 8 months to 16 years.

5kg to 55kg.

SPECS: Backrest recline, upright to full recline of 140 °. No tilt.

KEY FEATRURES • A portable, light weight and supportive

M2 MINI SHOWER COMMODE CHAIRS

seat that works for bathing or messy play

BEST SUITED FOR: 5 years to 80+ years [adults of small stature – any age].

• Bright colours, with 3- or 5-point

20kg to 80kg.

harness option and additional adjustable

SPECS: Tilt standard on some models/recline a custom option on all models.

support bumpers.

Adjust support – seat, backrest, height.

A recline feature means that even children

KEY FEATRURES

with reduced head control or sitting

• Designed for children & small adults who are difficult to place in standard chairs.

ability can use Splashy. It comes with four

• Adjustable components to allow for a child’s growth.

interchangeable foam supports which can

• 100% stainless steel construction for longevity in wet areas.

be used as a headrest, lateral, pommel or

The M2 Mini shower commode uniquely adapts to a child’s growth without the need for

anti slide support.

replacing costly seat shells, whether it be on a standard, self-propelled, tilt-in-space or

activerehab.com.au, medifab.com.au,

tilt/elevate model. avantinnvoations.com.au

specialneedssolutions.com.au

6 6 SO U RCEKI DS .CO M . AU

wherever you go.

BATHROOM AIDS

BATHEROOM AIDS

accessories R I F T O N S U P P O RT S T AT I O N SPECS: Child to adult. Up to 113kg.

117cm to 203cm.

KEY FEATRURES: Wall mounted, height adjustable with safety stop feature. Quick release kneeboard.

Cleanable upholstery and frame.

Angle adjustable. An innovation in toileting, the Support Station enables toilet transfers for people with physical disabilities.

Designed to allow users to assist in their own personal hygiene – providing them greater dignity and independence. At the same time, it provides benefits to carers by reducing injury due to heavy lifting and difficult transfers. dejay.com.au

RIFTON HTS P O RT A B I L I T Y BAG

MOBELLI HANDLES SPECS: Grab length 110mm, Total length 330mm. Max user weight 105kg. Portable Dual Grip Telescope with vacuum safety indicator: Grab length 340mm-465mm

SPECS: Portability

Total length 560mm – 685mm. Max user weight 85kg.

base clearance

KEY FEATRURES: Portable one-hand grip with vacuum

Small and Medium

safety indicator. Portable – no requirements for drilling.

47cm. Not available

Available in fixed or telescopic lengths.

for the Large Size

The safety indicator of the Mobelli handles is revolutionary and differentiates them from others on the market. The Mobelli safety lock constantly monitors the vacuum and shows a warning if the handle is unsafe and/ or needs to be reset. medix 21.com.au

System.

KEY FEATRURES Portable, Carry Bag Lightweight, Folding. The Portability base and carry bag provides for greater

S P E C I A L T O M A T O P O T T Y S E A T SPECS: This Potty is made from a soft-touch material which has an outer skin to prevent peeling or tearing and also prevents liquids from penetrating the core.

KEY FEATRURES: Convenient comfort with soft, comfortable support. There is an inner lip built in to safely secure the potty within your existing toilet seat. This Potty Seat comes with its own plastic lined carry bag to assist with safe & convenient transportation when out and about. Colours available: Lilac, Aqua, Grey, Cherry and Lime. dejay.com.au

independence and

WIN

SEE PAGE 79

the freedom to travel and take the HTS on the road.

The lightweight folding frame (for small and medium sizes) makes toileting possible while travelling.

The folding base is not meant as a primary base. medix21.com.au

I SSU E 26 | AU T U M N 2021 67

Watche s R ead s

&

W E C A N B E H E RO E S This family movie on Netflix is about a group of super-hero kids (the Heroics) who have to save the earth from alien invaders. One of the team is

Books and shows on our radar right now…

non-verbal and there’s also a wheelchair user so some great representation for our kids!

RAISING A RARE GIRL Award-winning writer Heather Lanier’s memoir about raising a child with a rare syndrome, defying the tyranny of normal, and embracing parenthood as a spiritual practice that breaks us open in the best of ways.

F L O AT Float is a Pixar short which has been

THE REASON I JUMP

available to watch on Disney+ for a while

Written by Naoki Higashida when he was only thirteen,

who discovers that his son is different from

now. The movie tells the story of a father

this remarkable book provides rare insight into the behaviour of

all the other kids because he floats. To keep

autistic children. Using a Q&A format, Naoki explains things like

them both safe from the judgment of the

why he talks loudly or repeats questions, what causes him to have

world, Dad hides, covers, and grounds him.

panic attacks, and why he likes to jump. He also shows the way he

But when his son’s ability becomes public,

thinks and feels about his world – other people, nature, beauty,

Dad must decide whether to run and hide or

and himself. The book has also been turned into an ambitious

to accept his son as he is.

documentary which will be available in Australia later this year.

Follow Source Kids

G E T YO U R D A I LY DOSE OF INSPO AND INFO!

ON INSTAGRAM & FACEBOOK @sourcekids @sourcekidsmagazine sourcekids.com.au

6 8 SO U RCEKI DS .CO M . AU

WATCH, READ & APPS

Ap p s

to help v isua l motor sk ills TOCA BUILDERS

DOODLE BUDDY PAINT DRAW

Toca Builders is a new way of

Your child can use their fingers

creating and crafting things

p These great apps can hel ll! you work on this core ski developing reasoning and problem-solving skills for younger and older kids. The dot-

to create pieces of art with stamps, stencils,

with blocks, that encourages both creativity

backgrounds and tools that work just like

and curiosity. Jump, walk, roll and rotate the

art tools (minus the mess!)

to-dot game reinforces sequential counting and helps develop fine motor skills as your child completes each picture.

TOUCH AND MOVE! SERVICE VEHICLES

builders to use their unique skills, and they will help to build whatever you can imagine!

DEXTERIA JR

Use hand-eye coordination skills to drop,

Dexteria Jr. is a set of hand and

spray, smash and lift blocks to construct

finger exercises to develop fine

new objects – may it be a house, lamp or

motor skills and handwriting readiness. The

maybe a banana?

app’s unique hand and finger activities take full advantage of the iPad’s multi-touch

READY TO PRINT

interface to help build strength, control,

Ready to Print is a

and dexterity.

This one has lots of fine motor fun for motor vehicle fans - build a road and then use those little fingers to move cars around. Drag and place trees, houses and other buildings and you have a little town planner on your hands!

IWRITEWORDS

comprehensive tool for parents, therapists and educators to help teach prewriting skills to children in order to build a strong foundation for beginning printers.

This award-winning app teaches

ALIEN BUDDIES PRESCHOOL FUN

your child handwriting while playing a fun and entertaining game that

Engaging activities, varied

is great for working on visual motor skills –

The app progresses through the pre-writing

difficulty levels and visual and audio

skills in a specific order, so that children

modes let you customise the app to

can master the visual-motor, visual-

reinforce colour, shape, number and letter

perceptual, and fine motor skills necessary

learning. The puzzle provides levelled

for correct printing patterns.

shape recognition and manipulation while

help Mr. Crab collect the numbered balls by dragging him with your finger – and drawing the letter at the same time.

All apps are available to download on the app store.

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Living with

heart disease

W

“I didn’t know whether I’d be giving birth to a live child or not.“

70 SO U RCEKI DS .CO M . AU

hen one of your miracle babies is diagnosed with a major heart condition in-utero, and then needs major surgery during the middle of a global pandemic, it’s an understatement to say the journey of parenthood has been an emotional rollercoaster.

For Rebecca Fitzgerald and husband Mitchell the last two and a half years have been marked by stress but touched by hope with the arrival and survival of their much-longed-for daughter, Audrey.

Rebecca and Mitchell, from Belair in South Australia, had struggled to conceive and five years ago were thrilled to welcome a healthy, happy, typical young boy, Declan, born after extensive IVF. They were then overjoyed to discover they were pregnant, again via IVF, two years later.

But Audrey’s pregnancy was far from normal. At 20 weeks they were told their baby had significant issues with its heart and they were encouraged to undergo an amniocentesis to gain a clearer picture.

“Having gone through IVF for both kids they were like miracles to us so we didn’t want to take the risk of an amniocentesis because the 1/200 chance of miscarriage was too much of a risk for us,” Rebecca remembers.

“We would have found out if there were more chromosomal abnormalities that could have been associated with the heart condition, but we knew we would love her when she comes out, however she comes out.”

Other scans and tests provided a diagnosis of Tetralogy of Fallot, which is a rare condition caused by a combination of four heart defects – Audrey would be born with a hole in the heart, an overriding aorta, stenosis of the pulmonary artery

HEART DISEASE

and a thickening of the right wall of the heart.

“The doctor showed us an image of a normal heart compared to what Audrey’s heart looked like and I didn’t know whether I’d be giving birth to a live child or not. I burst into tears and Mitchell was as white as a ghost like he was about to faint.

“Doctors say it’s one of the better heart conditions to have but all we hear is ‘major heart condition’.

“Mitchell has a congenital heart defect – Coarctation of the aorta, which is a narrowing of the large blood vessel that leads from the heart – but we did all the screening genetically which took five months and it turned out that Audrey’s condition was not at all related to her dad’s.”

Audrey was born a “beautiful, plump, pink, gorgeous baby” who didn’t need to spend much time in the NICU nor be sent to Victoria for emergency surgery immediately.

Her first surgery was at six months of age in Melbourne.

“We had her surgery date moved three times which was challenging because we had a nearly three year old preparing for his birthday and trying to live a normal life,” Rebecca recalls.

“With the help of the Travel Assistance Scheme we eventually flew to Melbourne and paid for my mum and Declan to come with us so we could stay together and have as much of a normal life as possible.

“She had a 7-8 hour surgery to repair the hole in her heart and widen the pulmonary artery and did really well.”

Her second surgery to remove scar tissue was deemed necessary before she turned two. But it would fall due as Victoria was crippled by COVID-19.

“It sort of came out of the blue for me because she was running and playing and seemed so fine but it had to happen in a six month window. We were planning to leave on a Sunday and on the Thursday before, COVID really hit. We were told to still come but a few hours later they

“Everyone says that 2020 was a hard year but imagine having open heart surgery in a state crippled by COVID...” said it was postponed.”

Eventually the surgery was rescheduled for May but only Rebecca could travel with Audrey because of hospital visitor number restrictions associated with the pandemic.

“Everyone says that 2020 was a hard year but imagine having open heart surgery in a state crippled by COVID and being split from your family for seven weeks,” Rebecca reflects.

Thankfully, Audrey’s surgery was a success.

Rebecca says her family wouldn’t have coped as well as they have if it hadn’t been for the help of Heart Kids.

“You sometimes feel guilty about getting overwhelmed but they have been amazing. They’ve checked in with the family to help us navigate our new normal.

“I love how they promote their heart

beads and bracelets so that you can track and create a tangible record of all the tests and medical procedures you need to have as a Heart Kid. “The Heart Beads really help me take it all in and process it and understand it’s okay to be upset and overwhelmed.”

Audrey requires an electrocardiogram every three months to ensure her health remains on track.

“As a parent you think your child is doing well because she is growing taller and bigger and really thriving but you don’t know what is happening inside your child’s heart. She is so vivacious and cheeky and you probably wouldn’t tell she had a heart condition if you didn’t know.

“People ask ‘Is she fixed?’ I wish!

We say she’s beautifully repaired at the moment but there will be more surgeries in the future because her heart needs to grow with her.”

I SSU E 26 | AU T U M N 2021 71

HEART DISEASE

OVERVIEW

Congenital Heart Disease

FOR MORE INFO: HEARTKIDS.ORG.AU SWEETHEARTDAY.ORG.AU

72 SO U RCEKI DS .CO M . AU

C

ongenital heart disease is the biggest killer of babies under one year old with four lives lost across the country every week.

The sad statistic is provided by Dianna Crisp, the Digital Strategy and Marketing Manager of HeartKids, an organisation offering support to people with congenital or childhood-acquired heart disease from diagnosis through to adulthood.

“There are over 65,000 Australian babies, children and adults living with congenital heart defects and heart disease acquired during childhood,” Dianna says.

“Eight babies are born with CHD in Australia every day, that’s 1 every 3 hours. CHD does not discriminate, it can occur at any time even if there is no history of heart disease in the family.”

While there is no cure, Dianna says that due to advancements in medical technology and procedures more children are living into adulthood.

HeartKids has invested over $3 million worth of funds into a number of research projects and as part of the National Action Plan for Childhood Heart Disease, the Commonwealth Government is investing $18 million into six research projects targeting the prevention of neurodevelopmental and mental health complications, understanding the impact of prenatal and postnatal factors affecting the health of children born with CHD and their families, and exploring the role of exercise and increased activity in reducing the impact of CHD. Dianna says the impact on those living with or caring for someone with CHD is immense.

“It can be a stressful and isolating experience for families as their world changes. Life can change so quickly

and their dreams of parenthood can be very different from the reality of what happens. Having to learn medical jargon and having very different milestones for their children becomes the norm.

“It is not the same for every family, however the financial and psychological demands of caring for people with CHD can affect family systems greatly. Many suffer from PTSD, anxiety, depression, financial hardships and even marriage breakdowns.

“Depending on their condition, those with CHD may not be able to take part in physical activities and peer-to-peer activities like school camps.”

HeartKids offer peer to peer nonclinical support and also assists by providing emergency care bags, food parcels, some financial assistance and specific medical equipment when required.

“We connect families together so they feel less alone in their journey and provide information so they can better understand the journey ahead.

In the acute phase of treatment, we want to smooth out the bumps in the road as much as possible, as the ride can be rough enough without all the usual day to day worries. It really is an emotional rollercoaster,” Dianna says.

“We have support coordinators in all major Children’s hospitals (COVID-19 permitting) and provide in-community support especially hen families arrive home from hospital and effectively are on their own.”

HeartKids organises a fundraiser in February to coincide with Valentines Day, encouraging people to donate or sell bracelets to help fund its assistance programmes which include a support help line – 1800 432 785.

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