Source Kids Summer 2020

ISSUE 25 / SUMMER 2020

r e m S um s e b i V

PA L L I AT I V E C A R E – W H A T I S I T E X A C T LY INCLUSIVE GYMNASTICS

IN

THE JOY OF C R E AT I V I T Y A N D SELF-EXPRESSION

OCIATION W H

THE PERFORMING ARTS

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IT

A

M A K E YO U R SUMMER A FUN AND SAFE ONE

NDIS +service ag reem ents

Free roaming Dairy Farmers A2 Goodness + prebiotic.

WITH ADDED PREBIOTICS to feed good gut bugs.* *

As part of a balanced diet.

66

56

38

contents 5

We love 6 Welcome

18 NDIS service

SUMMER SPECIAL 10 Make this summer a super safe one 15 Keeping it simple

ISSUE 25 / SUMMER 2020

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PA L L I AT I V E C A R E – W H A T I S I T E X A C T LY INCLUSIVE GYMNASTICS

IN

Ambassador Finley Coll Photography: Melanie McNiven

THE PERFORMING ARTS

THE JOY OF C R E AT I V I T Y A N D SELF-EXPRESSION

4 SO U RCEKI DS .CO M . AU

OCIATION W H

On our cover, Source Kids Brand

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IT

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M A K E YO U R SUMMER A FUN AND SAFE ONE

NDIS +service ag reem ents

agreements explained by Leap in!

30 The need to feed 32

50

Life with a tube

Imagination =

fed child

creation product feature

during the summer

35

break

Tube feeding need

56

to know

Paediatric palliative

16 Shopping for a

37

safe summer

Tube feeding

20

accessories

care – a parent’s perspective 60 Love and life inside

Getting out and

38

about again this

Swallowing 101:

post-covid summer

what you need

66

to know

Head over heels for

24

a children’s hospice

inclusive gymnastics

Float with fun

42

this summer

The performing arts

28

48

Fun and therapy at

The joy of creativity

69

the beach and park

and self-expression

Speech apps

68 Watches and reads

FUN STUFF

DA I LY A N D W E E K LY SCHEDULES FOR SUPER LEARNERS! These fabulous daily and weekly schedules have been put together by the team at Cerebral Palsy Alliance. These are great to use whilst maintaining a certain routine during the COVID restrictions and beyond! There is a “drag-and-drop” version, whilst the PDF version is “cut-andstick” for those who like visuals. cerebralpalsy.org.au

S T O RY T I M E W I T H K E N Z I E Tanya Savva’s daughter is quite the adventurer. Kenzie now has her very own YouTube channel where this brilliant young, blind storyteller reads educational, fun and inspiring children’s picture books. Kenzie can’t see but that doesn’t stop her! She narrates all the stories by memory!

IG: @storytime_with_kenzie FB @storytimewithkenzie

O

RI ES

H A R RY P OT T E R P L U S H

ST

Harry Potter is a beloved story for

O F FRIE N D

many and one that spans across different ages! If you have a fan in your house, check out these gorgeous plushes – including the Hogwarts

P!

Story time with a difference!

I

londontoycompany.co.uk

SH

Train. Harry delivers to Australia!

WONDERCHUMS Wonderchums have some exciting news to share!

Onesie is looking for new families to join his crew in January 2021. Each day your child will receive a message from Onesie – there are also many great stories to be enjoyed about the joy of inclusive friendship! wonderchums.com

I SSU E 25 | SU M M ER 2020 5

WELCOME

magazine

H e ll o S u m m e r !

P

ut your hand up if you are literally counting down the days until January 1, 2021?

My hand is firmly up in the air that’s for sure and I think most of Australia feels the same way.

As we head into Christmas and the New Year, the usual trepidation and fear seems much less than that of previous years. I think 2020 has instilled in us a new-found resilience to adapt to whatever happens and an ability to live in the moment, whatever that moment looks like!

So bring on 2021, and let’s round out the year with a bit of fun too! Our summer issue is full to the brim of summer goodness with some fun and simple ideas for getting out and about, keeping safe over the warmer months, taking therapy outdoors at the beach or park, and some fab summer product spreads to float around in or to use to enjoy the summer months safely.

This issue also features the performing arts and the joy of creativity and self-expression, a look at tube feeding and some incredible family businesses that have evolved because of having a tube-fed child, and we also tackle the hard topic that no one wants to dwell on but is a reality for many families in our community – palliative care, with some beautiful stories from families and organisations.

I hope you enjoy the read and get loads of ideas and inspo to help you enjoy the summer months ahead with your tribe. The team at Source Kids also want to wish all of our community a wonderful Christmas and New Year and a very healthy and happy start to 2021 – we’ve got some big plans for the new year that we are gearing up for and we can’t wait to share these with you.

In the meantime, before we sign off for 2020, we wanted to do something a little cool for our community after such a rough year, so we have put together a digital Christmas Gift Guide filled with super amazing pressie ideas. AND… one lucky person will win every single product included in the Gift Guide – valued at over $5000! Head on over to our website www.sourcekids.com.au/win to check out the Guide and enter now to WIN.

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, Renee Swannack, Leap In!, Autism Swim, LiveBig. 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 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

M Y N O O K - T H E U LT I M AT E P L A Y S O F A The Ultimate Modular Play Sofa is here! With 10 individual pieces, your child’s imagination is unlimited as it allows children complete creative freedom, encouraging independent play, while being safe and cosy too.

As well as being Australian Made and ecologically sound - this is children's furniture that complements any space in your home! mynook.com.au

THIS...

The KID is the lightweight wheelchair that will follow your child’s growth. Innovative, adjustable and really light at just 4.5kgs – KID has been designed to offer children

E TH E R WI TH COM ES I SE

ARIA KID WHEELCHAIR

NCE NDE PE IDENCE E F N D CO N F L

TO G

FROM THIS TO ...

the chance to access the wheels in the best possible way for an efficient push!

‘ABOUT ME’ F R E E P R I N TA B L E

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The team over at Remindables has put together a great free

VEGEPOD

printable. Their ‘About Me’ overview is filled out by YOU —

The Vegepod is an incredibly

the person who knows your child

versatile and adaptive way to

best. With the turbulent year

create that veggie patch in your

our kids have experienced, this

garden! The award winning self-

communication aid will be a great

watering raised garden beds are

one to help with new transitions.

perfect for children with limited

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mobility. Vegepod prides itself on providing a simple and easy way to grow vegetables at home with your child. Get planting today!

FB and IG: @vegepod vegepod.com.au

SHARE THE IMPORTANT INFORMATION YOU NEED A TEACHER TO KNOW ABOUT YOUR CHILD

MODIBODI PERIOD KIT The new limited edition period kit by Modibodi is perfect for your tween to help navigate changing bodies. The kit contains a pair of RED underwear, a RED Waterproof Bag, a period fact booklet, a spa headband, Happy Skincare Balm for lips and face, affirmation cards; all in sweet reusable packaging. modibodi.com

I SSU E 25 | SU M M ER 2020 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!

Manual Wheelchairs

Tilt-In-Space Wheelchairs

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Positioning/ Sleep Sytems

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Car Seats & Harnesses

Recreational Equipment

Call us on 1300 131 884 to find out more about our products and how you can arrange a COVID-safe trial at a location of your choosing or at one of our showrooms. You can also view our range on our website astris-pme.com.au.

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Ma ke t a su h i s s u m mer p er s a fe one Minimise the risks of the Aussie summer and have maximum fun

T

here’s nothing quite like an Australian summer. We all love the warm weather and the great outdoor life this season brings, but our children can be more vulnerable than their peers and there are things we need to be extra mindful of during this season of fun and sun. The heat, hydration (or lack of ), risks around bodies of water, and sometimes simply the aforementioned great outdoors

10 SO U RCEKI DS .CO M . AU

itself can throw up additional challenges.

No matter how well we plan, accidents can, and do, happen but we can at least prepare ourselves for what summer has in store. We take a look at some of the issues and ways to make sure that this season is an extra safe one.

Water Safety

The holiday period presents unique challenges to water safety with a high percentage of drownings in Australia occurring during the summer months.

Autism Swim have a fantastic 5 step water safety plan* to follow which includes:

1

Check your pool fences: | Make sure yours completely isolates the pool from the house and yard, has self-closing and self-latching gates and is compliant to the Australian Building Standards.

2

Practice wearing life jackets: | Wearing life jackets is essential to ensure safety in the case of an incident.

Life-jackets can be uncomfortable and overwhelming for some children so consider creating a social story about wearing one, and practice wearing it at home and during swimming lessons using a slow, desensitisation approach.

SUMMER SPECIAL

3

Consistent attendance at high | quality swimming lessons: Encourage your child to continue swimming lessons through primary school and choose an Autism Swim Approved service which addresses all aspects of the National Swimming and Water Safety Framework including movement and swimming strokes, survival and lifejacket skills and rescue skills. Parents must pay close attention during swimming lessons, to have a clear understanding of their child’s abilities and limitations.

4

Supervision and wandering | prevention: Close, constant and attentive supervision of children in or around any water is a primary and absolutely essential preventative strategy. For beginner swimmers, adequate supervision is “touch supervision” in which the supervising adult is within arm’s reach of the child so he or she can pull the child out of the water if their head becomes submerged under water.

5

Know the signs, rescues and | cpr training: Drowning probably doesn’t look like what you’d expect it to. Signs to watch for include: • Head low in the water, mouth at water level.

• Head tilted back with mouth open.

• Eyes closed or glassy and empty, unable to focus.

• Hair over forehead or eyes.

• Not using legs – vertical.

• Hyperventilating or gasping.

• Trying to roll over onto their back.

• A ppear to be climbing an invisible ladder or trying to swim in a particular direction but not making headway.

Immediate resuscitation at the submersion site, even before the arrival of emergency medical services is the most effective means to improve outcomes in the event of a drowning incident.

Consider whether your CPR training is up to date.

Wh en to ma ke th e cal l Call 000 if your child has two or more of the following symptoms as they may have heatstroke: * Not sweating (at all) * An extremely high body

Dehydration and heat exhaustion

It’s important to stay alert and mindful of how your child is faring in the heat, and how much they are drinking. Symptoms of dehydration include: thirst, not making tears, decreased urine output, decreased sweating, lethargy, muscle cramping, heart palpitations, nausea and vomiting.

Children with special needs are often at higher risk of dehydration because of their diagnosis, their medications or simply because they may be less able to read their body’s own signals. It is imperative that parents/carers are aware of how much fluid their child requires and whether their diagnosis means they are at high risk.

PREVENTION Provide plenty of water to drink and check with your doctor to see how much extra water you should be putting down your child’s gastronomy tube if they have one.

• Keep indoors in the heat of the day or stay in the shade.

• Prevent sunburn.

• Wear a hat and light clothing.

• P rovide light and water filled foods like watermelon, yoghurts and salads for snacks and meals and avoid sugar as much as possible.

• Consider adding coconut water or

temperature * A very fast and strong pulse * Throbbing headache * Dizziness and confusion * Shallow, noisy breathing * Loss of consciousness

electrolytes if the day is particularly warm, your child is being active or they have had diarrhoea.

• I f you know you have a big outdoorsy day ahead of you, plan to drink plenty in the days leading up to it.

• Remember that playing IN the water is not the same as DRINKING water – and schedule drink breaks.

CURE • I f you see signs of heat stress in your child take them indoors into airconditioning or into the shade and cool them down.

• Offer them drinks with electrolytes.

• Use a shower, hose or cool compresses to cool their skin. Don’t use ice packs without a cover to protect their skin.

• Don’t use adult rehydration or sports drinks that could dehydrate them further.

See your doctor if symptoms don’t improve, or they worsen.

I SSU E 25 | SU M M ER 2020 11

Unlocking the potential of support.

We want to uncover exactly what our community wants to know about getting the most out of support workers.

A nd the be st par t , it’s powered

by YOU! Whether you’re curious about the different roles support workers can play in helping achieve NDIS goals, the sourcing and hiring of teams, or simply the day-to-day management - we want to know...

Tell us your unanswered questions, gaps in your knowledge, or what you need to better understand what’s involved.

mable.com.au

@sourcekids @sourcekidsmagazine

Source Kids are delighted to partner with Mable - the website that enables people living with a disability to connect with independent support workers in their community. Using our combined experience, we’ll help provide the tips, information and advice you need, as part of an exclusive content series across Source Kids.

We want you to feel more informed, empowered and confident in navigating the world of support workers, ultimately leading to better outcomes for your child and family.

Submit your questions and what you want to learn here...

12 SO U RCEKI DS .CO M . AU

sourcekids.com.au/survey/

SUMMER SPECIAL

Is your child a runner or prone to wandering?

For some families, simply being outside in crowded public spaces more during the summer can present challenges. Busy parks, beaches, play areas, walking tracks and more all present a risk if your child is a runner or prone to wandering. As you all well know, we are very rarely in ‘offmode’ when we’re out with our kids but there are products and strategies you can look at to set your mind at ease in these circumstances.

The first goal is to develop an understanding of why the behaviour is happening.

Just of a few of the reasons your child may be running off: • T he environment is causing sensory overload. Children sometimes see running (and escaping) as their only option to relieve the sensory overload.

• T hey become anxious around crowds.

• T hey had a picture in their head that something would happen in a certain way and that hasn’t happened.

• T hey simply did not want to go where you were taking them.

The list of possible reasons is endless.

The key is to know that running away in public is not random. It is happening for a reason.

In the moment, what can you do?

When your child is already anxious, chasing will typically make them run faster and become less aware of where they are actually running. Instead, try to keep an eye on where they are and walk slowly towards them!

If they are in close proximity and

catchable, then hold them firmly in your arms, sending them a message that you are there to support them.

Plan ahead. If your child runs off often, have a safe place for your child to run to where they can relieve any sensory overload and is a safe place if they’re feeling overwhelmed. If you can nominate a safe spot, let them know there is somewhere they can go to where they will be found and won’t be in trouble.

Also, put strategies in place for yourself to remain calm (gentle breathing), knowing that as your own anxiety levels increase you are actually adding to the situation by either providing the reaction your child was after, or adding to your child’s anxiety and thus increasing the intensity of the behaviour.

If your child is a wanderer there are some great wearable tracking devices available such as the Moochies Smartwatch or even an Apple Watch if your child is old enough for one. Name tags, ID bracelets and even labelled clothing can also help ease your mind.

If your child should become lost, it also helps if you have a recent photo available – perhaps snap one of them in their swim gear on the day, if you’re headed to the beach, and also a written description of your child’s special needs – will they respond to their name, can they reply to questions, will they run away etc.

We hope that all of the above can help you to have a fun, relaxed summer enjoying our beautiful great outdoors.

Finally, it’s especially important to make sure this summer is a COVID safe one for you and your family.

Check out our tips on page 20

By Nicole Davis *Autism Swim have a range of resources to support the development of a wandering prevention plan and can help to ensure it is appropriate to each individual’s needs including the world first Wandering and Drowning Prevention Toolkit. More information can be found at autismswim.com.au

I SSU E 25 | SU M M ER 2020 13

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* Kylie range of products with five layers of protection include Supreme Mac, Kids Supreme Mac Standard, Utility Pads and Chair Pad.

SUMMER SPECIAL

FARMER’S MARKETS A visit to a Farmer’s market is a delight for the senses. Let your child help prepare a shopping list – touching, smelling, weighing, searching for the right things on the list all come into play and your child can work on social skills too.

Just make sure you find some time to relax and indulge in some tasty treats while you’re there!

Ke e pi ng i t si m ple

during the summer break Let’s keep summer nice and simple with these downsized activity ideas that any frazzled parent can manage.

PUZZLE IT OUT If your child is older and/or has

SHARE SCREEN TIME Speaking of which…screen time during the school holidays is unavoidable so why not find some time to get involved with your child’s screen activities. Ok, you might not want to become the new Fortnite champion but search out some apps you approve of and have a bit of fun together.

P L A N T A V E G G I E PAT C H This is the activity that keeps on giving. Your child will love planning the

the ability, then working on a 1000-piece

garden and buying seeds and plants with

puzzle during the hotter summer months

you, then there’s the physical labour and

can be so satisfying. Puzzles help develop

fine motor work involved in the digging

finger strength, perseverance and

and planting. Watering and watching

problem-solving skills as well as hand eye

for seedlings to sprout and the plants to

T H E L O C A L L I B R A RY

co-ordination skills. If bigger puzzles are

mature is an activity that lasts all summer long! If you’re planting fruit and veggies

While many libraries will have

beyond your child’s abilities, they will still love to help you sort pieces and look for

this is also a wonderful opportunity to think

certain colours etc. to help you out.

about including bush tucker and learning

COVID restrictions in place regarding numbers, they are open, and a visit to the cooling space of a library to quietly browse some books accompanied by muffins and juice at a local café is one of our Source

about our indigenous plants and foods.

BOARD GAMES Why not schedule a board game

PICTURE PERFECT Give your child a camera to play

Mama’s favourite ways to spend a gentle

and card game hour each day? One of

morning during the school holidays. The

our Source Kids has become a demon at

with and let them take photos of you, your

next hour or so at home can then be spent

a number of games and is rarely beaten

pets, the aforementioned veggie patch, the

browsing your book selections together.

at Uno, Labyrinth and Yahtzee. These

neighbourhood or anything they choose.

Reading aloud or simply describing

games are all great for working on skills

You can have fun just looking at them or

pictures with your child is great for

like logic, strategy, problem solving and

print them out and let your child start a

language development.

numeracy. We’re sure you have some

scrap book. You’ll have a wonderful

family favourites too. And there’s the

memory of the summer and a bit of fine

schedule of events for story time, art

added bonus of getting everyone off their

motor practice for your child with all that

sessions, rhyme time and more.

screens for a while!

cutting and sticking!

Also keep an eye on your library’s

I SSU E 25 | SU M M ER 2020 15

A safe summer Nothing beats summer in Australia when it’s time to get out and about together. Here’s a round-up of products ranging from water safety to sun safety and everything in between!

BOARDMAKER FOR SOCIAL STORIES Boardmaker is a popular program used to create communication aids for children and you can use it to create your own social stories of what is needed for your family’s safe summer. For example, this picture of the beach shows what to expect, and you can add additional information as needed so you and your child can work through expectations of the beach, prior to setting foot on the sand – to ensure a fun and safe beach visit!

POA get.boardmakeronline.com

STUCK ON YOU – TURKISH PONCHOS Stay dry and shaded with these personalised Turkish ponchos from Stuck On You. One side is sand-repellent 100% Turkish cotton whilst the other

KEEP YOUR KIDS H Y D R AT E D A L L DA Y L O N G

is fast-drying and absorbent 100% cotton towelling.

Keep the kids cosy and dry with the Turkish Poncho’s hood as it will keep them sheltered all throughout Summer! RRP $49.95 stuckonyou.com.au/turkish-poncho

The Ecococoon insulated water

GPS PERSONAL TRACKER – KEEPING TRACK OF OUR KIDS WHEN WE CAN’T!

16 SO U RCEKI DS .CO M . AU

bottle comes with a leak-proof top and will keep your kids hydrated all day

The NutTAG™ SEEK GPS is a powerful personal live GPS

long. Double walled

Tracker and safety alarm. The user-friendly device

means the bottle

includes features for tracking your children including;

is super insulated,

Emergency SOS, call the device and listen-in or speak

condensation free

two-way (call and talk like a mobile phone), and Geo-fence

and keeps liquids

alerts which alert when your tracker leaves a safe zone.

cool for 10-12

Designed to keep the whole family safe! RRP from $259.00

hours. RRP $35.95

nuttag.com.au

biome.com.au

SHOPPING

MEDICAL ID W R I S T B A N D TA G S

S L I P O N A S H I RT

MedicAlert’s durable,

Long sleeved rashies will keep kids

non-allergenic

protected in the sun! Available in

stainless-steel medical

loads of prints – check out the range

IDs are attached to

to find one your child will love in the

a silicone wristband

hot, sunny days ahead. RRP $24.95

tag, which can also be

cottonon.com/AU

added to a range of trackers and watches to further convey important information regarding your child.

RRP from $40.00

S L I D E O N S U N G L A S S E S F RO M B A B I AT O R

medicalert.org.

Babiator is a range of polarised sunglasses that are ideal for eye protection from UV damage. These sunglasses are light, comfortable, flexible and durable. They also have a loss and replacement warranty. RRP $54.95 childrenssafetyglasses.com.au

, p o l S , p i l S k e e S , p a Sl ide! & Sl SEEK SOME SHADE This simple and easy to use pop up shade tent is perfect for the garden, beach or bush!

RRP $16.00 kmart.com.au

SLOP ON SUNSCREEN

SLAP ON A H AT Hats that cover the neck are ideal

You can’t go past 50+ factor sunscreen

for days out in the rays to protect

from Chemist Warehouse to protect skin

little necks from catching the

in the harsh Aussie summer sun.

sun. RRP from $33.00

RRP $15.94 chemistwarehouse.com.au

traveluniverse.com.au

I SSU E 25 | SU M M ER 2020 17

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

W H Y A R E S E RV I C E A G R E E M E N T S I M P O RTA N T ?

1 | Get the right supports Service agreements help ensure you get the right supports that are identified in your NDIS Plan.

2 | Agree on services They allow you to tell the provider what you need and agree on how services will be delivered. This can include when or how often the service will be provided.

3 | Everything is in writing Service agreements help everyone understand what they should do. By having this information in writing it’s available for future reference.

ndis Service Ag reem ents Explained By Leap in!

Plan Management

What are they for? Why do you need them? The team at Leap in! gives us some useful info about NDIS service agreements.

O

ne of the things we get asked a lot of questions about here at Leap in!

HQ is service agreements.

Service agreements are an important aspect of implementing your NDIS Plan because they set out how and when you receive supports from a service provider.

So, what is a service agreement?

A service agreement is a simple, written document that explains your responsibilities and the responsibilities of a service provider. Service providers are people or businesses that provide services to you such as physiotherapy, cleaning or other supports.

The Leap in! Crew recommends that you have a separate service agreement 18 SO U RCEKI DS .CO M . AU

4 | Your responsibilities are clear They help you remember your responsibilities and what is expected of you. This might include things such as turning up for appointments on time or giving 24 hours’ notice to cancel an appointment.

5 | How to end or change an agreement Service agreements contain important information about what to do if you need to make changes or want to end the agreement. For example, how much

with each person or business that provides you with services.

Service agreements can include the following information: • T he services and supports that will be provided.

• How much the services and supports will cost.

• W hen, where and how you would like the services to be provided.

• How long you need the supports for • W hen your service agreement will be reviewed.

• The provider’s cancellation policy.

• Your responsibilities and your provider’s responsibilities under the agreement.

Every service agreement is different, but templates are available that help to ensure all the important information is covered.

notice is required if you want to cancel the service.

6 | If you have a problem Each service agreement includes the name and contact details of a person to talk to if you have a problem.

7 | Payment for services They explain how much services will cost and how services will be paid for, avoiding any confusion.

Leap in! are here to help.

If you have more questions or would like help getting started on your NDIS journey, call on 1300 05 78 78 or sign up to Leap in! plan management today.

Pos t- Cov id su mm er!

Getting out and about again Some tips to help you and your family enjoy this summer safely

A

s we write this, COVID cases in Australia are thankfully very low, but the situation is always changing and sometimes quickly. If, as we hope, things settle down for the summer, some of our kids may need a bit of extra assistance adjusting as life returns to ‘normal’ or a new version of normal.

Here are some things to consider:

Talk to your child

If you’ve spent a long time in isolation or if your child has been away from school for a significant time, they may be anxious about going places over the summer. Social distancing may be difficult for them to understand and if you choose (or have) to wear masks this may be another obstacle for them to overcome (both in terms of wearing them or seeing other people in them).

HYGIENE PRACTICES

Reinforce good hygiene practices with these fun activities: Soapy sing-a-longs

2. T ell them that it’s their pet Elbow

The advice is to wash hands for at

Monster and they have to feed it

least 20 seconds and a way to keep

sneezes and coughs!

kids focused on the task in hand (quite literally) is to sing a song while washing.

Hands to yourself

To keep them motivated, why not let

It’s really tough to teach some of our

your kids decide on a playlist

kids to keep their hands to themselves

of different choruses from their

while out in public and also to avoid

favourite tunes.

touching their face. Try teaching your child to keep hands in their pockets or

Cough Monsters

clasped together or holding an object

Do you need help trying to get your child

can work as a distraction too. You could

to cough or sneeze into their elbow?

work with an OT to help your child learn

Make an elbow monster to assist you!

strategies to help with this and to give

1. Grab a pen and draw a funny face in

you some strategies to help reinforce

the crease of your kid’s elbow.

2 0 SO U RCEKI DS .CO M . AU

new habits.

If you are able, it’s important to have a conversation with your child to find out where they are at and what their level of understanding is. Ask open ended questions and let them lead any discussion you may have.

Don’t dismiss what your child is feeling by telling them not to worry.

Validate what they are feeling and redirect and emphasise the things you can do together such as practicing good hygiene etc.

Chat boards and socials stories can also help immensely with explaining new rules and processes.

Have a plan

Having a little plan of things you’re going to do over the summer break can help quell any anxiety your child may have. You can use a visual planner to communicate the plan, and also make use of those social stories again to go into more detail about what to expect when you do go out and have some muchneeded fun.

As is the way of the world now, however, it’s worth communicating too that things may change and you should have a few back up plans ready in case things close at the last minute etc. Get your child involved in the planning and ideas process, explaining the different scenarios as you go as this can help your child’s understanding and anxiety too.

SUMMER SPECIAL

Dealing with masks and mask wearing

Like the coronavirus itself, the situation regarding masks is ever-changing, and where they’re not mandated it’s also a personal decision as to whether you and your family adopt wearing them. For advice about whether face masks are appropriate for your child, talk to your GP, paediatrician or other healthcare worker.

Regardless, masks are out there in the community and it’s worth working with your child on this aspect of our new existence.

Social stories, developmentally appropriate online videos and other visuals are some of the best ways to introduce the concepts of masks to our children. Your child’s OT or regular therapist can be of enormous help here and will be able to work through any specific issues your child may have.

Remember that children learn through play so setting up some play situations involving masks can be effective in helping children get used to them and explore their feelings. We love these ideas from Raising Children.net which you can adapt for your child’s age or stage of development: • M ake up silly songs or rhymes about face masks. Use plenty of actions.

• Play a game of peekaboo with your mask. Make funny faces each time you take your mask off.

• Give your child a face mask to touch and play with during everyday activities like bath time. For example, your child might like pretending to wash a mask during water play.

• Dress up your child’s favourite soft toys in a face mask. You could use the toys to put on a puppet play.

• G et your child to draw a picture of family members wearing face masks.

Or make a collage using pictures of face masks.

• Turn a face mask into an art and craft project. For example, stick streamers to your face mask to turn it into a jelly fish.

Or, let your child decorate a face mask for you to wear.

You may find that communicating with your child is more difficult when you’re wearing a mask. Again, Raising Children.net* have some great advice: • Turn to face your child and use lots of eye contact.

• Try speaking more loudly, slowly and clearly so your child can hear you through the mask.

• Use exaggerated expressions so that your smile or surprise shows in your eyes.

• Use body language and gestures like nodding and touching your child gently to show you’re listening.

• Play ‘guess the expression’ with your face mask on, using your eyes and eyebrows to show different emotions.

• Play charades to give your child practise in understanding and using body language, hand gestures and movement to communicate.

• Give your child a lot of cuddles and face time when you’re at home together and you’re not wearing a mask.

We hope all of the above help alleviate some of the anxieties and concerns you and your child may have and that you all have a lovely, safe summer break!

By Nicole Davis Visit raisingchildren.net.au/guides/ coronavirus-covid-19-guide for more coronavirus advice and resources.

I SSU E 25 | SU M M ER 2020 21

Occupational Therapy

for children

Occupational therapy can help children understand and work with their bodies so they can complete daily activities and foster independence. An occupational therapist can help build foundation skills such as handwriting, cutting, tying shoelaces, self-care (dressing, feeding and toileting), attention, coordination, balance, movement and more. Our occupational therapists are experienced in working with children who have complex needs, developmental delay or with disability.

Fine motor — synchronisation of hands and fingers with the eyes Gross motor — balance, coordination, posture, strength and endurance

TELEHEALTH SESSIONS AVAILABLE Telehealth is an alternate and flexible way of delivering therapy services. Instead of driving to a clinic, your face-to-face appointment is virtual, using a phone, tablet or computer.

No wait times, no travel costs, and ensuring the continuation of support during difficult times are just some of the benefits.

Self-care — daily skills such as dressing, feeding, cleaning teeth and toileting Sensory processing — the way children receive, interpret and behave to senses Visual perception and visual motor integration — processing visual information and matching with appropriate action Self-awareness and body awareness — understanding where our bodies are and how our bodies move

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

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Float with fun

th is su m m er

There is an abundance of great flotation aids on the market, the question is, which one is right for your child?

Here is a selection of some of our most loved and useful.

If you need to, have a discussion with your child’s physio who can help with the final decision on what best suits your child’s needs.

JUMBO POOL NOODLE Perfect for all ages! Jumbo pool noodles provide great fun in the water by giving additional buoyancy when placed under the body. Made from high-quality closed-cell polyethylene foam which stands up to pool chemicals and resists water absorption.

RRP $12.95 clarkrubber.com.au

ARMBANDS These armbands are a great confidence boost for your child as they go through the 3 stages of learning to swim. RRP $15.00 hartsport.com.au

SAUSAGE DOG SWIMMING This one is fun for all the family!

No swimming needed for this, as

T H E F L O AT M AT This Float Mat has excellent buoyancy and

mum or dad takes you for a ride on the big inflatable sausage dog.

RRP $79.00 amazon.com.au

is great for learning to swim or just to have fun in the pool! It can be used as a platform for diving or for kids to practice kicking. RRP $110.00 hartsport.com.au

SWIM TRAINING KIT This Swim Training Kit includes all the gear you need for a great swim session – whether your focus is on upper or lower body. It includes a small kickboard, adjustable swim googles, hand paddles to create resistance and a wet gear bag.

RRP from $65.90 hartsport.com.au

2 4 SO U RCEKI DS .CO M . AU

SHOPPING

SHADED SOLID SWIM R I N G – U V P RO O F This shaded float is perfect for babies and young children to keep them protected in the sun, whilst enjoying the water. The float needs no pump, as its contents are pearlfoam with the added benefit of never leaking or sinking.

RRP $87.90 amazon.com.au

3 I N 1 J E T PA C K KICKBOARD The Zoggs 3-in-1 Jet Pack will have

S L I N G C H A I R P O O L F L O AT

your kids wanting to swim faster

This Aquaria sling chair pool float provides

than the speed of light! This learn

an alternative for children who have trunk

to swim aid features a kickboard

control by providing an unsinkable upright

and back float combined and

position. Enjoy drifting around the pool with

includes a double action safety

your child – it also comes complete with dual

buckle. Suitable for children up to

cup holders for mum or dad’s beverages!

25kg in weight. RRP $35.00 zoggs.com.au

RRP $59.00 poolandspawarehouse.com.au

BABY AND CHILDREN SWIM JACKETS With adjustable straps for a secure fitting, the Zoggs swim vest provides added buoyancy whilst having fun in the water.

The bright and colourful design adds extra fun and visibility for their trips into the water. RRP $39.99 rebelsport.com.au

The Konfidence Youth Jacket allows the user to achieve the best possible position in the water, making learning to swim The Babywarma is made from a

much easier. Its adjustable

flexible 2mm-thick soft neoprene,

buoyancy system allows for

which is designed to easily dress

staged swimming development

your baby in. It allows babies aged

for the wearer and the hi-grade

0-24 months to stay warmer in the

soft neoprene provides a greater

swimming pool for longer. Baby –

sense of security. Youth – RRP

RRP $47.95 brandstyle.com.au

$124.95 brandstyle.com.au

I SSU E 25 | SU M M ER 2020 2 5

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Fun & therapy at the beach and park Don’t tell the kids - these activities are therapy in disguise!

S

ummer is traditionally a time to kick back, relax and have a bit of break from the routine of appointments and therapy sessions, but to say it’s been a strange old year is a bit of an understatement!

Depending on where you live, the rules in place, or your own situation, your child’s therapy program has probably either taken a bit of a hit or has looked remarkably different to previous years.

Even if you are taking a break as the year comes to a close there are ways you can work on key skills without it feeling like ‘therapy’ for your child. The beach and park offer a number of different opportunities for a work-out while getting valuable fresh air and a natural source of vitamin D. Plus, it’s all free (and boy, isn’t that a bonus!).

Don’t forget to take your hand sanitiser and disinfectant wipes to clean

down equipment – it will just take a few seconds and put your mind at ease! Let’s get out and about and enjoy this summer!

THE PA R K

The wide variety of play equipment in parks gives kids wonderful opportunities to move their bodies and develop strength in different areas.

Monkey Bars

Monkey bars provide strengthening of the hands and finger muscles that are used for grasping and handwriting, those important fine motor skills. Of course, with all abilities, you can adapt this movement in a variety of ways, so for example, if your child is unable to fully support themselves, you may be able to hold them to provide added security. The monkey bars are also great for working on eye-hand coordination, core strength, balance, and developing arm and leg strength.

Ladders and beams

Ladders and beams provide opportunities for improving balance and coordination. Think of the ladders leading up to slides or balancing on different equipment lower to the ground.

You can even draw a chalk version on the ground to incorporate the same movement. Climbing and heavy work activities stimulate the proprioceptive systems for your child whilst working on all important coordination skills.

Slides

Slides are a great tool for visual perceptual skills (the brain's ability to make sense of what the eyes see). Practice climbing up those stairs, while holding on to the handrails – it’s fantastic for those kids who are still mastering their stair climbing skills.

Swings

Swings will meet your child’s needs for vestibular stimulation – which is the sense of movement that supports body awareness, coordination, balance and visual skills. By playing on a swing, the vestibular sense will give information about where their body is in space, and if your child is moving, how quickly they’re moving and in what direction.

Climbing frames

Climbing frames have children in constant motion! Not only do they work on gross motor skills, balancing, hand eye coordination, but also planning on where to move next! The heavy work that climbing provides stimulates the proprioceptive systems (knowing where your body is in space).

Stepping stones

We are very fortunate in Australia that we have some of the most diverse and beautiful parks for our children. Some have incorporated beautifully crafted stepping-stones which are ideal for balancing. If balancing is not appropriate for your child’s needs – you can play a game of toss. Just use some beanbags or a sock full of rice, and aim it at the stepping stone. A great alternative and one that works on hand/eye coordination!

SUMMER SPECIAL

Jumping waves

Communication – playing shops

A fun favourite, ‘playing shops’ is a good way to work on communication skills.

Someone is the shopkeeper, making coffees and the other is the customer.

Take turns in ordering and being the person behind the ‘counter’. Practice those important skills of simple greetings, listening and turn taking.

It’s also beneficial to remember that children, just like us, prefer different amounts of sensory input. While at the playground, some will prefer lots of swinging, while others may not. The playground helps children learn about what sensations make them feel good inside and it’s a great learning experience tied to a simple ‘play at the park’.

THE BEACH

Ahh the beach! What a quintessential part of so many Aussie summers. Of course, not all of us live on the coast and many people do travel from country regional areas to the beach – how much that can happen this year, who knows!

Next time you are at the beach, whether local or on a holiday break, remember these easy ways you can incorporate some ‘therapy’ without your kids even knowing!

The jumping of waves is a great allrounder. It not only strengthens the heart (for cardiovascular health), it increases oxygen capacity and stimulates the metabolism! Then there’s the gross motor action of jumping, timing and balance!

So, whether big or small, get jumping those waves and enjoy the many benefits!

Playing ‘catch’ with the waves

Playing catch with the waves – you run towards the waves breaking, you then have to run back away from the wave so it doesn’t ‘catch’ you! This is a fun one, as each wave is different – it works on planning and processing when to run away from the wave, as opposed to running toward it. Works on all those great big leg muscles too – quads, glutes and calves!

Digging holes and making sandcastles are just a couple of ways to move the body and to also get those creative juices flowing! Is your sandcastle going to have a moat? Will it have water in the moat, will the castle be big or small and will you decorate it with pretty seashells? Will your brother or sister stomp on it at the end, to work their leg muscles?!

Playing beach cricket or beach soccer

Swimming is so beneficial as a good all-rounder. It works every muscle group in the body. If your child is not a strong swimmer, there are plenty of floatation suits that will help keep them safe while they work on their swimming skills using arms and legs.

Take down your cricket set, AFL, NRL or soccer ball and have a fun game with your family. The fun of playing on the sand gives a different sensory experience and a good work out for the legs. Plus, with the added bonus of hitting the ball with your body or with a bat, works on those gross motor skills in a beautifully fresh environment!

Digging holes and making sandcastles

More sensory opportunities

Swimming

Sand is perfect for some sensory work, but for some sensory sensitive children you may have to do some desensitising and take things slowly. Even us adults hate feeling sandy sometimes!

The tactile environment of the beach gives additional opportunities for a bit of sensory exploration with all the natural ‘touch’ objects – the sand, the water, sticks, shells and coral. Have fun!

I SSU E 25 | SU M M ER 2020 2 9

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

The need

TO FEED Does your child have issues with food, eating, and getting enough appropriate nutrition?

Helping them to thrive in the face of feeding challenges is often a matter of perseverance, creativity, and good oldfashioned trial-and-error.

E

ating issues are a huge source of frustration and stress for parents of children with disabilities, and there’s no onesize-fits-all approach to solving them – in fact, “solve” is a word you might have abandoned long ago, as often it’s a matter of finding what works for your child and your family. With medical professionals, dietitians, and nutritionists eager to weigh in (and track your child’s weight), it’s all too easy to get fixated on the numbers on the scale, the kilojoules in each morsel they take in, and the amount of untouched food you’re scraping into the compost bucket.

3 0 SO U RCEKI DS .CO M . AU

Why is my child having such a hard time?

There are myriad reasons why your child might have difficulties with eating and nutrition.

For some disabled children, physical conditions such as a slow-moving digestive system (dysmotility), issues with nutrient absorption, reflux, chronic vomiting, or swallowing difficulties (dysphagia) might make taking in food feel unpleasant or painful.

Children may also lack the oral skills necessary to successfully eat. Eating involves not only the ability to know how to “move” food around, but also the development of skills to know how to handle its specific textures and qualities.

For those who have been tube-fed from a very young age, sucking and swallowing skills may need to be re-learned with the help of a speech pathologist before your child can move on to chewing.

If your child is tube-fed, it can be challenging to find the appropriate rate and volume of food they can tolerate, and balancing this with their nutritional needs is like walking a tightrope at times.

Also, if your child is on a continuous feed

or tube-fed for many hours each day, they may not ever feel hunger cues – or might not realise what hunger feels like when they do experience it.

Sensory issues around food can also limit what children will eat. Many medically fragile and neurodiverse children have genuine sensory issues that can affect what they are willing to eat – they may refuse certain textures (wet, crunchy, soft), avoid certain colours or foods that “look” a particular way, or be unable to eat mixed textures, such as pasta with sauce or salad with dressing.

Children with allergies or intolerances may have a very restricted range of foods

SPONSORED

they are able to eat, which can cause difficulties in ensuring they are receiving enough of the right kinds of nutrients for their growth and development.

The myth of “They’ll eat when they’re hungry!”

Parents of children with disabilities are used to hearing the well-meant, but ultimately unhelpful, assertions from other adults that their child won’t starve themselves, and will, in fact, eat when they get hungry enough. But when it comes to a child with a disability or exceptional needs, “hungry” is not the primary consideration.

We may make jokes about the “autism food pyramid” (hint: It’s nothing but chicken nuggets) and roll our eyes at celebrity chefs who suggest hiding grated carrots in pasta sauce (our kids can find the smallest shred, and there goes the whole meal). But if you’ve ever scoured the shelves of every supermarket in a 10km radius for a very specific food you know your child will eat, or got frustrated when a manufacturer decided to “rebrand” their product and now your child won’t touch it even though it’s exactly the same (but in a different packet), you’ll know that getting something – anything – into your child is the real goal.

Ideas to try If you’re struggling with your child’s feeding and eating, you may be unsure about what you can try that may help them. Here are five simple strategies to work on at home together with your child.

• Play with food. If your culture permits it, letting children experience sensory play with food without any pressure or expectation to eat it can be a good start toward becoming familiar

with new foods. Set up a bin with dried rice or pasta shapes and let your child sift, scoop, shovel, drive toy vehicles through, or just move around with their fingers or hands. String macaroni elbows to make a necklace. Make play dough together with natural ingredients.

Take the stress away by keeping the activity low-key.

• Try food chaining. The idea with food chaining is to introduce new foods to your child’s repertoire by building on foods they already accept. It’s based on the principle that children will eat what they like to eat. So if you know your child will reliably eat chicken nuggets, you may be able to offer them crumbed rather than battered nuggets, then similar-sized pieces of chicken that you’ve crumbed yourself at home, then reduce the amount of crumbs but keep the size and shape the same, then try chicken with no crumbs.

• Consider quality over quantity.

Hiding vegetables in mince might not work for your child, but what about using Dairy Farmers A2 Goodness + prebiotics in place of regular milk? Fortified bread or flour? Cereal with added vitamins or minerals? Check the labels on the foods you’re buying, and if there’s an easy option that has more healthy ingredients or added helpful nutrients, this is an easy way to ensure your child is getting more of the good stuff. Choose high-quality ingredients to make the food your child will eat as nutritious as possible.

• Keep mouth-related interactions pleasant. Gentle, kind, fun touches on the face and mouth may help children who have oral aversion to start to become more desensitised to having things near their mouth. Stroke your child’s cheek gently, offer safe toys they can “mouth” in order to explore with their tongue and lips, and practise blowing bubbles together. If you’re washing your child’s

face, do so gently. In fact, give them a wet face cloth of their own to play with and chew on while you carefully clean them up.

• Seek feeding therapy. Consulting a professional, like a speech pathologist or occupational therapist, to find out whether feeding therapy might help your child doesn’t have to be a last resort. Often these professionals can give you some good ideas and advice in a consultation appointment, and there’s real value in having them assessed by someone who has seen feeding problems before and can identify what might help your child at the stage they’re at. They may share some exercises or strategies you can practise at home that you may not have even thought of.

Above all, know that you aren’t alone in dealing with this – even though having a child with feeding and eating issues can feel isolating, there are many others across the country who are in a similar boat. Joining an online forum might give you some relief (and a safe place to vent if you’re frustrated).

By Katherine Granich Source Kids Health Contributor

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I SSU E 25 | SU M M ER 2020 31

Stacey Stacey Phillips has tube fed one of her sons since he was nine weeks old and is on a mission to brighten up the lives of those in a similar situation.

Queensland-based Stacey and her husband Anthony have three sons – Isaac, 7, Harry, 6 and Callum, 4.

Callum lives with a number of diagnoses – he has low tone which causes him issues with swallowing, core strength and fine motors skills and also has laryngomalacia and tracheo-laryngomalacia, dysphagia and hyperphasia. He also had central apnoeas as a baby and was on home oxygen for about 18 months.

“When Callum was a baby he had a lot of trouble with breathing and would stop breathing suddenly,” Stacey recalls.

“He was always very hard to feed and he would always struggle to finish his bottle or it would take us an incredibly long time to do so.

“When he was 9 weeks old we discovered he was aspirating due to multiple issues but most predominantly due to his floppy airway which he then had surgery on to repair and a tube inserted for feeding.”

Stacey recalls the experience as scary and confronting.

"We knew there was something wrong but we really struggled to find help for him or someone to take us seriously,” she says.

“Once we met an amazing, understanding paediatrician, everything changed. We were admitted to hospital during our appointment and four days later he then had airway surgery.

“We went on to have multiple surgeries and investigations to try and find answers. All up we spent the first 6 months’ of Callum’s life in hospital.

“When we came home, it was an adjustment for the whole family. We 32 SO U RCEKI DS .CO M . AU

Life with a

Tube Fed Child Two tube feeding journeys and how the mums are giving back to the tubie community

had to find a new routine and a way to explain to our boys that Callum will have his tube for quite some time.

"We eventually found our groove and adjusted our lives and the rest is history.”

Stacey is making history of her own – she recently won the AusMumpreneur Handmade Business Award for her business Tubie Fun, which she started in 2017 following a hospital admission.

“We had just come home from another scary, long hospital admission in which

Callum had complications from having his feeding tube placed.

“Every night I would research his symptoms and try and find a diagnosis for him. Eventually, I knew I just needed a break and so I decided to sew some button pads (to cover the feeding tube) to help take my mind of things.

“Eventually friends asked me to make them and then others did as well.

I thought if I helped a few people I’d try and help a few more.”

TUBE FEEDING Sarah and her boys, Cohen (L) and Lewis (R)

Stacey’s journey with Callum led to her setting up Tubie Fun

Stacey’s on-line store now sells a range of colourful hand-made kids products to support their feeding journey.

“We are very lucky to have such a supportive community who love our products. I now work almost every day to try and fulfil orders as quickly as possible.

“I think there is something about people buying from someone who also understands what this special needs journey really is like.”

Stacey says that the hardest part about tube feeding is inclusion.

“A lot of people don’t understand the process of feeding or think it can have limitations on what he can and can’t do.

I think it scares a lot of people as well as they just don’t see it around.

“Most people have no idea Callum has a feeding tube until it needs to be used as it’s mostly hidden under his clothes. His party trick is to run around lifting his shirt up to show people and most people are either terrified or happy to ask him all about it.

“Everyone who is tube fed deserves to feel just as special as everyone else. I’d love to have more inclusion surrounding tube feeding. Fed is definitely best, no matter what it looks like.”

Sarah Being a single mother and having young twin boys would be a test of survival for many a person.

Add in a paediatric stroke and tube feeding and then you would be walking in the shoes of Sarah Thomas.

The Queensland mum has 12-yearold identical twins Cohan and Lewis, who suffered a cerebral haemorrhage when he was three, resulting in a stroke and cerebral palsy.

“Our world was tipped upside down, there is no other way to describe it,” Sarah recalls.

“We were living in a rural area at the time so were airlifted to hospital and had to stay in Ronald McDonald house. The generosity of strangers was incredible, I had no idea this community existed and I’m so proud to be part of it.”

Sarah says that Lewis’ initial diagnosis was drastic.

“Like many children that have a blockage of oxygen to the brain, there was a strong chance he wouldn’t survive,” she says.

“Doctors told me that if he did live, he would never walk, talk or eat again.

They said he would be severely disabled and his life would never be the same.

“While he was in hospital I realised that even though he was nonverbal, Lewis could still communicate with me.

At that point I knew we would get him back and resolved to do whatever it took to make that happen.

“Immediately after his stroke, I researched everything I could on his recovery. I quit my job and poured every second into his rehabilitation.

“There were times when Lewis had to be the main focus and I am so incredibly lucky and grateful for his twin brother’s generous nature. Cohan wanted him to get better as much as we did so he never felt resentful of what we were all going through, he was included in everything.

“He still has a long way to go but he has moved mountains already.”

Lewis now lives with right sided hemiplegia but has relearned to walk, run, talk and can eat about 15% orally.

He is fed by a tube the remaining 85 per cent of the time – a reality that was challenging at first but has since opened up new business opportunities for Sarah.

“I doubted my abilities a lot in the beginning. I knew nothing about enteral feeding, but I did know a lot

I SSU E 25 | SU M M ER 2020 33

TUBE FEEDING

about nutrition,” she explains.

“I researched as much as I could about healthy nutrition for tubies and I was very lucky Lewis was able to tolerate everything. It was also very handy having an identical twin to see what portions he should be consuming daily.”

Sarah quickly became frustrated about the origin and cost of the food she needed for Lewis.

“The only option available was from America and not financially achievable for our family,” she admits.

“I couldn’t understand why no-one was doing this locally, when Australia is blessed with an amazing range of fresh foods.

“I was determined to give Lewis nutritious, real food and the only way I could do that was to make it myself. Once I started, I realised that what I was doing could help others.”

And so, after two years of trial and error, Wholesome Blends was born.

“Finding a way to make the blends took a very long time. I was determined not to compromise on my goal of allnatural ingredients. I developed recipes with a friend of mine who is a qualified chef with a degree in Nutritional Science.

I also consulted with an amazing dietician who supports blended diets for tubies.

“My manufacturers have been fantastic. Trying to explain to them that taste wasn’t something we needed to consider took them by surprise, no one had ever wanted that from them before!”

“Consistency and nutrition are the two main areas that I focus on. The blends have a one-year shelf life and do not need to be refrigerated. This was really important to me as well, coming up with a feeding solution that was convenient and would make a carer’s life easier, not harder.”

Tube feeding need to know Tube feeding, also called enteral

tube, which is inserted up the

nutrition, is when a tube is placed

nose and down into the stomach,

along the gastrointestinal tract

a nasojejunal which is threaded

to allow liquid food or formula to

through the stomach and into the

be fed into the stomach or small

jejunum, the middle section of the

intestine.

small intestine, a Gastrojejunal or Transjejunal Tube which enters

According to the National patient

the stomach directly through

advocacy organisation for

the skin using the same site or

eosinophilic gastrointestinal

stoma as a G-tube and a Jejunal or

disorders, ausEE Inc., there are no

Jejunostomy which is placed in the

reliable statistics to outline the

middle part of the small intestine,

extent of tube feeding Australians.

called the jejunum, during surgery.

President and founder of ausEE

Tubes are often required for

Inc., Sarah Gray, estimates it would

conditions such as dysphagia,

be in the thousands of people.

failure to thrive, oral aversion, gastroparesis, severe

“The duration of time someone

reflux, cancer, brain injury,

may require a feeding tube varies

gastrointestinal conditions

greatly too. For example, in our

including osinophilic oesophagitis

personal situation it was my now

(EoE) – the allergic inflammatory

17-year-old daughter Bella who had

disorder that ausEE is Australia’s

a feeding tube from age 7 to age

peak national support and patient

12 but she does not require one

advocacy organisation for.

anymore as she has been able to maintain her own nutrition without

“Each year we host Australia’s

the tube,” Sarah says.

Feeding Tube Awareness Week (FTAW) as an important opportunity

“She had a gastrostomy feeding

to increase awareness and

tube when younger due to failure to

understanding to the greater

thrive, EoE, multiple food allergies

community about tube feeding

and Avoidant Restrictive Food

and raise some of the challenges

Intake Disorder (ARFID).”

faced and highlight the day-to-day

impact on individuals, carers and

A gastrostomy tube, sometimes

families.”

called a PEG, (percutaneous endoscopic gastrostomy) is placed

For more details visit :

in the stomach during a procedure.

feedingtubeaware.com.au

Some PEG’s have a tube always

or ausee.org

hanging out, and some replacement PEGs are flat (‘profile’, or ‘buttons’).

Other tubes include a nasogastric

FTAW will be celebrated nationally from 7–13 February 2021.

By Rachel Williams

I SSU E 25 | SU M M ER 2020 35

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Take a look at these great products to help with your child’s tube feeding management.

I N S U L AT E D F E E D B A G S These backpacks are fantastic for any child who may be on continuous feeds and needs freedom to move. The insulated

TUBE FEEDING A D H E S I V E TA P E We love these gorgeous adhesive tapes from A Simple Patch. So

bags have a loop or swivel clasp at the

many to choose from – it will be

top so the bag can be hung, and a large opening at the bottom to allow easy access for the formula. The Insulated Milk Bags

hard to pick just one! RRP from $1.50 asimplepatch.com

are compatible with the 500ml Flocare Bottle. RRP $65.00 tubiefun.com.au

M I C K E Y B U T T O N S PA D S The range of Mickey Buttons from our friends at Tubie Fun are so varied – it will be hard to choose just one! Mickey Button pads help absorb any leakage from the site and help keep the site clean and dry. Check out the newest inclusion to their range, Bluey! RRP $6.00 tubiefun.com.au

M Y B E L LY H A S 2 B U T T O N S My Belly has Two Buttons is about a little boy named Nico, and he tells you what makes him special...his 2nd button! Meikele Lee is the award-winning author of this book. Her books are an important asset to inclusion to help with her son’s condition and how he can relate to others with or without a feeding tube. In addition, her books help to educate the public about these life saving devices. From US $4.99 trendyk1.wixsite.com/meikelelee/about

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has everything you need for easy access for feeding your baby. With a water resistant dry liner, pocket to hold clean gauze and easy access to port! Ships to Aust – approx. $30.00 tubesies.com

G Tube Belts are a great alternative functional. They are worn around the stomach and offer protection to the feeding site. They have an access panel so the feeding tube is accessible during feeds and an additional panel to help hold the feeding extension in place. RRP $45.00 tubiefun.com.au

I SSU E 25 | SU M M ER 2020 37

THE WHOLE S WA L L O W These are the three main processes involved...

1

The Oral Phase... what happens in the mouth

2

The Pharyngeal Phase... what happens in the throat

3

The Oesophageal Phase... what happens in the food pipe

Swallowing 101:

what you need to know

A Speech pathologist at LiveBig has provided us with some useful information about the processes involved in swallowing.

I

t’s important to know that eating, drinking and swallowing is so much more than food just going down into your child’s stomach. The process starts from when food is getting prepared to enter the mouth including factors such as how a person is seated, how they physically place food or drink in their mouth and also how someone responds to food using their senses such as sight, smell, taste and touch.

The Oral This first stage involves using the lips, cheeks, tongue and jaw for removing food or drink from a utensil and preparing it to be swallowed. Lips and the jaw open and close when taking food or drink from utensils and then the side to side and circular movement of the jaw when chewing food prepares a bolus (ball of food).

Strength and tension in the cheeks keeps the food or drink in the middle of the mouth and adequate strength

3 8 SO U RCEKI DS .CO M . AU

means food or drink will not fall through between the cheeks and teeth.

The tongue has multiple roles to play.

It tastes food or drink and moves food in the mouth for chewing. It also mixes food or drink with saliva, forms, controls, holds and pushes the bolus towards the top of the throat and it moves around the mouth to see if there is any food or drink remaining.

The Pharyngeal (throat) This is also known as the ‘swallow reflex’ stage and is where the bolus moves through the throat and into the food pipe.

The parts of the mouth and throat in action here and their roles are: The soft palate which lifts up and seals the gap between the nasal (nose) cavity from the back of the mouth and throat.

This stops food or drink from travelling back into the nose.

The back of the tongue which squeezes against the back of the throat to push the bolus down the throat.

This stage is important to keep the airway protected. When the muscles are working correctly the following steps occur: 1. Vocal cords close and breathing stops temporarily.

2. The voice box moves upwards and forwards just below the base of the tongue.

3. A small flap called the ‘epiglottis’ acts like a trap door, closes over the voice box to create a seal over the airway.

This allows the food or drink to pass over the airway and into the food pipe.

The Oesophageal (food pipe) This third stage of the swallowing process deals with how the food travels from the throat to the food pipe and into the stomach.

What if eating or drinking is difficult?

When a person has difficulty with eating or drinking, they may present with

SWALLOWING DISORDERS

Dysphagia. This is the medical term used to describe swallowing disorders and it may occur in one or all three stages of swallowing.

Normal swallow function means food or drink can enter the stomach with no difficulties but in a person with dysphagia food or drink may enter the airway.

The following factors may increase the risk of Dysphagia: • Congenital abnormalities (e.g. clefts) • Developmental delays • Injuries or disease • Degenerative diseases (e.g. Parkinson’s Disease) • Severe breathing difficulties • Weakness in lip, tongue or jaw muscles • Poor posture • Refusal to eat or drink • Dry mouth • Dentition (the arrangement or condition of the teeth) If someone has Dysphagia, the following may occur during or shortly after eating or drinking: • Choking • Coughing • Change in voice (e.g. wet and gurgly) after swallow • T hroat clearing during eating and drinking • Shortness of breath • R aised body temperature with a wet cough Additionally, the following may occur over a period of time: • Severe breathing difficulties • A spiration pneumonia (fluid/infection

®

in the lungs) • Weight loss • P oor oral hygiene if there is food regularly remaining in the mouth • Longer eating times • Depression due to difficulty with eating and drinking • Reduction in social/group outings due to difficulty with eating and drinking • Dehydration or malnutrition if a person is not eating or drinking enough due to their difficulties In people with extreme swallowing issues, an alternative method of getting food and drink into the body may be considered. This may include: • Intravenous Fluids (IV) – Fluids are given via a ‘drip’ for hydration purposes.

• Nasogastric Tubes (NGT) – involves the use of a thin tube which passes ‘feeds’ (liquidised food) from the nose through to the food pipe and stomach.

• Percutaneous Endoscopic Gastronomy (PEG) – a medical procedure where the feeding tube is placed directly into the stomach allowing ‘feeds’ to go through.

• Total Parenteral Nutrition (TPN) – uses a needle or catheter to pass all nutritional needs straight into the bloodstream.

If your child is experiencing issues who can help?

A speech pathologist can assess a person’s swallowing skills. They may complete a mealtime assessment to observe your child’s eating, drinking and swallowing

skills and they will work with the child, their families, carers, support coordinators or supporter workers to develop a mealtime management plan or therapy plan to help support the person’s swallowing skills.

How is this funded?

A swallowing assessment, mealtime plan and ongoing management can be funded by your NDIS plan. The Speech Pathologist may recommend special supports required for eating and drinking such as spoons or modified cups. This can be purchased under ‘Consumables’ in the ‘Core Supports’ budget in your plan.

im portant info...

• Always dial 000 and request immediate assistance in the case of an emergency or choking episode.

• Contact a GP for any issues related to any general health decline, including but not limited to: ongoing chest infections, raised body temperature with a wet cough, loss of appetite and weight loss.

LiveBig is a specialist allied health and assessment services provider for people with disability. Call 1300 390 222 or visit livebig.com.au/ service/speech-pathology/ to find a Livebig Speech Pathologist near you

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I SSU E 25 | SU M M ER 2020 41

An interactive session underway with Sensorium Theatre

THE PERFORMING ARTS Three organisations creating space for disability in Australia’s performing arts scene.

J

ust as the mainstream arts world ignites passion and transforms the soul, three organisations are changing the culture of the disability arts scene one pirouette and performance at a time.

Based in three different states, Sensorium Theatre, e.motion21 and Screech Arts offer extremely different services but are united in their quest to spark imaginations and improve inclusion.

Sensorium Co-artistic Director, Michelle Hovane became involved with the Western Australian-based company soon after it first started operations in 2010.

As its name suggests, Sensorium provides audiences with an interactive 4 2 SO U RCEKI DS .CO M . AU

theatre experience that enlightens the senses.

“Our mission is to spark the imagination through bespoke, multi sensory theatre performances and storytelling and to make work for children with complex difficulties and those on the autism spectrum that they can understand,” Michelle says.

“I’ve fallen in love with the work.

It’s addictive to be able to give people the enjoyment of experiencing their first taste of the theatre.

“They really get swept up in the story which is a universal human experience that they can’t access in mainstream theatre. They don’t have to sit still and keep quiet because it is so interactive.

“We see lots of joy and happiness, excitement and understanding.”

Sensorium Theatre is Australia’s only company making live shows specifically designed for young audiences with special needs, including children on the autism spectrum and those with complex and multiple disabilities. It also offers inclusive audience shows for siblings and children without a disability.

Current show Whoosh takes the audience on board a spaceship that crash lands on a different planet.

“There is no separation. The performer and the audience are working together but the performers are leading the journey.

“It’s a really immersive work that puts children with access needs at the centre

AND ACTION

The joy of performance with e.motion21

of action. New recruits board a stunning custom-built spaceship for an interstellar adventure. Along the way, they taste real space food, propel through hyperdrive, crash-land and explore a strange uncharted planet.

“We have explored some more high-tech digital technology to assist kids or support those that use it on their own day-to-day lives with touch sensors for sound and light.”

Showing in Perth currently, it will travel across the country in 2021, having been postponed this year because of COVID-19.

Whoosh follows successful shows called The Jub Jub Tree, which was set in a forest and involved giant goat, donkey and rooster puppets that audiences could

touch and interact with, and Oddysea, which was an ocean-based journey about friendship and how you can experience it if you can’t move independently.

The shows are developed with

“Dance is such a beautiful way to express yourself without having to use words.” assistance from children within the target audience and only 15 children are in the audience for each show.

The ensemble have backgrounds in teaching or working with children with disabilities and have undergone training in the methodology of working with special needs audiences.

“You can’t just graduate acting school and just do it. Some performers are really suited to it and some are not,” Michelle says.

Sensorium also provides sensory readings of popular books and nursery rhymes to playgroups libraries and early intervention centres.

Having relied heavily on project funding, it has just received Western Australian government arts funding for three years to employ a general manager and build on a decade of innovation.

Another offering going strongly after a similar period of time is Victorian-based e.motion21, a not-for-profit organisation that provides a performance avenue for people living with Down syndrome.

“Dance is such a beautiful way to express yourself without having to use words,” says Artistic Director Anna Booth.

Founded by Cate Sayers, after she was unable to find an appropriate dance class to meet the learning needs of her daughter Alexandra, who has Down syndrome, e.motion21 held its first class in Kew in 2009, with six children aged 6 to 9 years.

In just over 10 years it has grown to become a fully accredited and registered provider of the NDIS with more than 500 participants aged from four to 50 I SSU E 25 | SU M M ER 2020 4 3

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AND ACTION

learning across 10 locations around Victoria.

The name reflects the joy (emotion) and physical movement (motion) facilitated through the program, and the 21 acknowledges the fact the people with Down syndrome have all or part of a third copy of chromosome 21.

Anna says its rewarding to work with a committed team to deliver dance fitness, wellness and nutrition programs for people with Down syndrome.

“I’ve been working here since 2009 so I have seen tremendous growth and development and the flourishing of our little ones into adults so it’s really wonderful to see the impact of the program on our participants,” she says.

Ten teachers work to deliver 40 classes each week with a team of volunteers assisting to provide a 1-to-3 support ratio for children and 1-to-5 for adults.

“We modify our teaching for their unique learning needs. People with Down syndrome are strong visual learners so we utilise story boards, sign language, floor taping or other key word signs to support communication and therefore understanding,” Anna explains.

“We teach to what motivates our students by using popular music and dance culture, and stretch them by developing their technique, developing more complex creative performances and collaboration with leading arts organisations such as The Australian Ballet School and the Melbourne Symphony Orchestra.

“We have recently developed a program where participants are fostered in creating their own choreographic skills to build their capacity to become professional dance teachers and choreographers.

“I am not aware of any other program around specifically for people with Down syndrome to achieve these skills so we hope to employ some of our graduates in our classes which is exciting for them.”

Further north in Brisbane, Queensland, is Screech Arts, an innovative and inclusive performing arts

The Screech Arts performers

school, run by disability support service CPL – Choice, Passion, Life.

Screech Program Facilitator Martina Cross says the initiative came to life more than 20 years ago because a group of parents, their children and CPL staff wanted to celebrate all abilities and prove that anyone can perform.

Twelve workshop and performance

can achieve the goals they set themselves through the creative and performing arts. Uniqueness and individuality are our thing, and we wouldn’t have it any other way. We believe that everyone who joins us is an artist in their own right and sometimes, all it takes is the right tools to help unlock their creativity.”

Some groups involved in the program focus on the fun, social aspect while the more advanced groups devise and perform major public performances for the community.

Martina says Screech Arts staff enjoy every moment of success they see each week.

“These “moments of success” range from small instances of interaction and building confidence, to artists performing on stage for the first time.

“For example, when a participant grows enough confidence to participate in an activity they haven’t done before.

A client makes a new friend. Or one of our artists using their communication device for the first time during a performance to say their lines. Our large scale performances are pretty special too, but it’s the week to week “moments of success” that makes a Screech Arts Technician job the best in the world.”

There are preconceived ideas about what people with disabilities can achieve and at Screech Arts, we strip these away. programs are offered, focusing on developing communication and social skills, confidence, teamwork, voice, movement, expression as well as the basic elements of drama and dance.

“The ongoing inspiration is our artists and ensuring their voices are heard in Brisbane’s performing arts community.

Our society needs to represent a more diverse range of artists and at Screech Arts, that’s our goal,” says Martina.

“Out in the world, there are preconceived ideas about what people with disabilities can achieve and at Screech Arts, we strip these away.

“We coach our students to realise they

By Rachel Williams I SSU E 25 | SU M M ER 2020 4 5

The joy of creativity and self-expression Creative and performing arts groups to help your child express themselves

T

he creative and performing arts are such wonderful outlets for our children, they can be used in therapeutic situations, help with fine and gross motor development, teach social skills and so much more. Take a look at these groups and services we’ve found around Australia – most groups seem to be operating normally at the time of writing but do check in case there are timetable changes or cancellations due to COVID. Also, check to see if there are any online options and get creative from the comfort of your living room!

Rockit Performing Arts (Mount Barker, SA) Rockit is a studio that does things a little differently. It was established as a centre that uses dance, drama and singing as tools to improve the health and wellbeing of the local community – with a welcome that includes absolutely everyone. There are inclusive mainstream classes, a diversity dance company, as well as the Launch Pad program which has been designed for students who require a carer present. rockitperformingarts.com.au

Perform-Ability (NSW)

Tutti Arts Kids & Youth (SA)

Perform-Ability is Australia’s fastest growing therapy-

Tutti Kids & Youth (TKY) provides South

based performing arts program for people of all ages with

Australia’s only out of school hours arts

special needs and disabilities. The principal of Centre Stage

program where young people with disability

Performing Arts, Miranda Daisy, founded Perform-Ability

can develop their creativity through the arts:

in 2010. There are now over 20 classes running in many

music and movement, drama, and visual and

locations throughout Newcastle, the Central Coast and

media arts. Their growing program includes

Sydney, with more than 120 students attending each week!

Music and Drama and Visual Arts as well as a

Offering programs within service providers, after school

theatre workshop program for children on the

classes and private tuition, Perform-Ability has something

autism spectrum. tutti.org.au/tutti-kids

for everyone. perform-ability.com

4 8 SO U RCEKI DS .CO M . AU

PERFORMING ARTS

Inside Out Theatre Club with Active8 (Brisbane, QLD)

Art Mania Studio (Wallsend, NSW)

Inside Out offers a space for members to

Art Mania Studio is a creative community hub that offers you a place to

explore their theatrical ability, developing

relax, unwind, meet friends and find yourself through art. This supportive

skills in imagination and creation as well

and inclusive space offers a wide variety of classes, workshops and block

as enhancing their love of theatre and the

courses that cater for busy lifestyles, different income levels, all age ranges

arts. Each session is designed to build

and diverse backgrounds and abilities. Alongside after school classes,

self-confidence and communication

Art Mania have created 6 Video Workshops with Art Kits available so that

skills through a range of energetic and

you can create works of art at home, following the instructions on the

enjoyable activities. Sessions follow a

video. artmaniastudio.com.au/kids-and-teens

similar lesson plan that includes both movement and vocal warm-ups, drama games, character exploration and improvisational exercises. Everyone between the ages of 5-25 years is welcome to attend. activeeight.com.au

Therapy & Dance Association Inc (Nerang, Gold Coast, QLD) Therapy & Dance Association is an additional needs dance studio offering a number of

BAM Arts Inc (VIC)

different dance style classes for children

BAM began life as BAM Allstars in 2009 when founder,

with a disability. Classes include Rhythmic

Lisa Murphy was looking for a dance class for her son,

Dance, School Yard Games, Intro to Hip Hop and

Buster, who has Down Syndrome. Finding there was

Advanced Dance. With the help of specialist

nothing suitable for his needs, she decided to get

teachers qualified in Dance and Occupational

something started. In 2019 BAM HQ was established

Therapy, they hope to help their members

and the organisation now offers other creative arts

express themselves through dance, exercise

beyond dance including visual arts, musical theatre,

and fun. therapyanddanceassociation.com.au

choir and more. bamarts.org.au

Arts @ Scope (VIC) If you want to be active, artistic,

InsideOutside Dance (Brisbane, QLD)

or just love being social, Victoria’s

This is model, Madeleine Stuart’s dance company! InsideOutside Dance

Scope can help make it happen.

is the leading NDIS registered dance school for people with disabilities in

Older teens and young adults can

Queensland offering 21 classes a week in 8 locations. They offer classes

explore their creative side with

in a number of styles of dance including contemporary, hip hop, Jazz,

three options:

Musical Theatre and Robot, also offering classes in yoga, drama, drumming

Kaleidoscope: an inclusive arts

and fitness. The overall aim of InsideOut is to create a dance school where

project that has been running

dancers with mixed abilities can have fun, get fit and make friends whilst

since 2006. Scope partners with

they learn, create and perform a body of work that we can showcase at twice

a number of community arts

yearly performances and local events. insideoutsidedanceensemble.com

organisations to support budding and established artists to reach their creative potential.

Telescope: a project that supports people with a disability to write and

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I SSU E 25 | SU M M ER 2020 51

Coordinating care and support: the way forward

If your child has special needs, you have probably come across some of the apps that match clients with

U

p until a few months ago, Carli had no experience organising paid support for her son, Lincoln.

Both Carli and her husband Gerard

work full time and for the past 3 years had

care and support workers. But how to choose the right one, get set up and make sure you are getting the right carer for your family’s needs?

been relying solely on their parents to take care of Lincoln while they were at work.

After seeing an ad on TV for mobility, a care matching platform, Carli got curious and began looking into what might be possible. With Lincoln on 24/7 ventilation, it was hugely important to find a carer who was qualified, experienced and who wasn’t intimidated by Lincoln’s needs. Fast forward to today and the family has carers who come regularly. Lincoln loves them, family tensions have eased, and Lincoln’s grandparents can now be grandparents more than carers.

Your matching journey: where to begin Different matching platforms offer different things. Who you can connect

Carli didn’t have time to look into all the matching platforms and try to make sense

the worker gets more in their pocket too!

For Carli, signing up to mobility was part

of what they were each able to provide but

of starting to receive care. It was all new to

she did know what was important to her.

her so having someone who could explain

After Carli saw the ad for mobility on TV, she

things with not only the app setup, account

picked up the phone and got the ball rolling.

setup and funds allocation, but also the entire process to get approved was

“I hadn’t had anything to do with

really useful.

organising care like this before, so I thought I’d just pick up the phone. They

The easiest way to get started with a

were really amazing and a great help. They

matching Home care platform is to ring up

explained stuff to me even when I had

and have a chat to make sure the app can do

dumb questions. We were originally NDIA

what you need it to. Here are some things to

managed not plan managed so we had to go

consider and to ask in that first phone call:

through a plan review to be able to access

• Who can I book? Independent contractors

and manage care through the mobility app.”

and/or registered providers? Support

One of the reasons Carli changed from

workers, registered nurses, allied health

with, how you can pay, money management

being agency managed to plan managed

professionals, cleaners, gardeners,

and budgeting, time sheets and invoicing,

is because her agency provider wanted

babysitters?

safety features and other functionality

to charge $60+ per hour for a Registered

• How do I know if they have what it takes?

varies greatly between the different

Nurse. With mobility, the costs are lower

Are workers qualifications and experience

platforms.

which means Lincoln gets more care and

visible in the app?

how to care

mobility.com.au

52 SO U RCEKI DS .CO M . AU

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Get some excellent toys or resources for your child and their • What about safety? What safety checks are in place and how are workers verified?

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m about the app

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loved one?

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• Is it easy to use? Can I book and pay for

of care – for yourself or Once Carli had decided on a plan

a loved one. Search and

for workers based on their availability and

manager, mobility reached out to them

book verified, available

location so I can find someone close to me

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care workers in your local

who is available at the time I need them?

allocation signed off didn’t take long and

area, all via the app. The

• How do I pay? Will it work if I am self-

Carli was kept in the loop the whole time.

cost of care is reduced

carers from within the app? Can I search

managed, plan-managed and/or agencymanaged? Will it connect to my plan so it’s seamless? Is there a secure way to pay from within the app?

• Can I see and manage my budget? Is there a way to track my spending and decrease the risk of over-spending? Can I keep track of invoices and payments all in one place?

Apps like these make things so much easier

as the mobility app takes care of the administrative burden such as scheduling,

When Carli needs to book a carer for

appointment tracking,

Lincoln, she gets on the app and books

compliance, plan and

someone in. Everything is confirmed

budget management, and

quickly.

seamless payment. We

“The app is super easy to use. It shows

spent three years building

me my budget, my calendar, what funds

the mobility app with you

I have left. I can see what I have used this

in mind. Our goal was to

week and the days I have used this month.

utilise technology to remove

Some people are right into new apps

The ease of being able to book a shift and

all the painful stuff. This

and technologies and some people really

select who is in your team is really good.

means you, your loved ones

aren’t! Make sure that you have a look at the

On the home-screen you can see all the

and your support workers

different interfaces of the apps to find one

upcoming shifts.”

can focus on what matters

Getting used to using the technology

you can make sense of.

If you get stuck setting up an app or have

It’s made a huge difference to Carli’s

most... your child.

family because they don’t have to rely

questions, always pick up the phone. Given

on Lincoln’s grandparents to help. The

that this will be an app you will be using

grandparents can now be grandparents

to organise care, you want to feel like the

more instead of having to be Lincoln’s

people on the other end of the phone are

carer.

helpful and supportive from the get go –

looking at registered nurses and narrowed it down to someone fairly close to us.”

It was important to Carli that Lincoln

Finding the right carer for your child

got along well with the carers too.

This all comes down to the quality of

absolutely adores. The first day that they

workers listed on the app, how much

were here, Lincoln didn’t even hesitate with

information is available about the workers

them, he was just straight up like he had

in the app, and whether or not you can chat

known them his whole life. When he knows

Carli’s advice to anyone going through

to and/or meet the worker before making

they’re coming it’s absolutely hilarious. He

a plan review and wanting to change

a booking.

gets so excited when he hears the knock on

whether it’s a “silly” question about how to do something in the app or something more complex about care coordination.

Making the transition from NDIA to Plan-Managed from NDIA managed to Plan-Managed is

Based on Lincoln’s condition and the

to “advocate for what you want and have

care that he needs, Carli was selective.

as much supporting evidence as you can

“I looked up their experience and,

“We have found two nurses that Lincoln

the door. He LOVES them and I think they adore him as well.”

“We couldn’t have asked for better

– whether it be from your medical team,

because Lincoln has non-invasive

support getting organised and getting

therapists or whoever.It’s going to benefit

ventilation 24/7, I wanted someone very

set up from that first call

your child and will also benefit the family.”

experienced and quite skilled, so I ended up

through to now.”

support@mobility.com.au 1300 GET CARE (1300 438 227) I SSU E 25 | SU M M ER 2020 53

Pa ed ia tr ic Pa ll ia ti ve Ca re

A Parent’s Perspective

P

alliative care. The words conjure up thoughts of terminal illness, emergency meetings, heartbreaking goodbyes, desperately clinging to whatever time is left with loved ones.

They're not words anyone would ever wish to be associated with a child.

Our son was 3 months old when his neurologist gently explained that his condition was life limiting. He gave us a heart wrenching time frame of life expectancy for children with similar devastating forms of epilepsy. It's a wide frame, but the crushing fact that we'll say goodbye to our child remains.

For a long time I avoided opening up about my feelings, as if discussing it would jinx my son. As if speaking out loud about it would cause it to happen sooner than it should. I also found it difficult to even find the words I needed to express the unbearable pain I felt and still feel.

Every night when we turn on his seizure monitor after we've snuggled him to sleep.

I try not to think about it, but fear creeps in at obvious times, like ambulance rides and when we're being met-called into ICU. The toughest is when it crosses my mind during good times.

Thankfully, our son lives his life full of joy. It's difficult not to match his love of life. With each smile and giggle he reminds us to stop and enjoy the moment. To move through our fears

The heart-broken feeling of anticipatory grief

and create as many beautiful moments together as we possibly can.

After a particularly close call that we certainly weren't prepared for, a friend of mine who had recently said goodbye to her own beautifully complex son, gently suggested that we request our son be under the care of our hospital palliative care team.

Naturally, I reeled at the idea. The

The cruel reality of our situation is that things can take a turn for the worst at any time; we're constantly fighting to keep this at bay. Every dose of medication, every suction of secretions in his airways, every time he's treated for a chest infection. Every new cluster of seizures the medications don't control.

5 6 SO U RCEKI DS .CO M . AU

By helping carry some of the weight of our situation, our son’s palliative care team leave more time for us to spend loving him.

thought of him being cared for by a palliative care team would shine a light on the harsh reality of our situation. My friend reassured me that palliative care looks very different for children than it does for adults, that it's more about being prepared and supported than anything else. I parked the idea in the back of my mind, but also knew that children like mine need a specific type of care, as do their families.

I turned to the internet for a little more information and again felt reassured by what I found. 'Palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite, and care through death and bereavement.

After opening up to our son's paediatrician about my feelings, she referred us to the RCH Palliative Care team. The introduction and first few conversations were emotional, but there was a sense of 'hoping for the best but

PALLIATIVE CARE

preparing for the worst' which I appreciated. We discussed our definitions of quality of life, of comfort and end of life care, which medical interventions we were comfortable with and how we would appreciate their expertise and guidance when it came to making such huge decisions. They also reassured us that nothing is ever set in stone and that different situations may require different decisions and that all of this is perfectly fine.

We now know we have a team around us that understands our hopes, dreams and fears. A team who can answer the tough questions, help us to navigate the medical system, can work alongside and support other teams who also provide

care, ensuring our sons needs are being met and that we feel supported.

They're familiar faces during hospital admissions, a phone call when things are quiet to ensure we're all okay and a bonus in that they tend to have a fantastic sense of humour, not an easy task to master in such a serious setting, but they do it well.

Most importantly they genuinely care for our son and appreciate the happy, loving, sweet little boy that he is.

Knowing that when the time comes, they will be there to support us through our toughest days brings a comfort we wish we didn't need, but one we're grateful to have.

By helping carry some of the weight of our situation, our son's palliative care

team leave more time for us to spend loving him.

Which is the one thing we need most of all.

By Renee Swannack Renee is Co-Founder of 'How to Make Lemonade' - a platform created by three mums who share their musings about life raising children with complex medical conditions and additional needs.

Celebrating the good, the bad, the downright ridiculous, and doing whatever they can to have a laugh along the way. facebook.com/lemonadevillage I SSU E 25 | SU M M ER 2020 57

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LOVE AND LIFE

inside a children’s hospice

The organisations providing medical care, support, community and respite for children and their families

D

eath, and in particular the death of a child, is a topic most people want to avoid but for two amazing women at the front line of the paediatric palliative care industry, they say the experience shouldn’t be feared.

Instead, Narelle Martin and Andrea Coe both highlight how inspiring it is to see families spend time together and create special memories.

Narelle is the facility manager at Sydney’s Bear Cottage and has been at the hospice since 2001 _ earning an OAM for her services to the industry in 2016, while Andrea has been a nurse practitioner at Queensland’s Hummingbird House for nearly four years and is now its hospice lead.

Both say their facilities feel like home to many guests, with newborns through to 18 and 19 year olds using the services.

“We are a warm, friendly, home-like environment while providing the child with the best nursing and medical care and caring for the family as well. They are greeted with warmth and often our therapy dog Beau (a Golden Retriever),”

6 0 SO U RCEKI DS .CO M . AU

Narelle explains.

Adds Andrea: “We call it a home away from home because basically it is a big house with lots of indoor and outdoor spaces with big windows to let the light in, so it is a lovely, warm environment.”

Both facilities can cater for up to 8 guests at a time. Many admissions are as a result of genetic conditions, neuromuscular conditions and more commonly, brain tumours.

“Some children come multiple times throughout the year for respite over many years because they are surviving much longer because of the advances in medical care, while some will come once as an emergency admission to get their pain under control or for their end of life care and will only be here for a few days,” Narelle says.

Andrea has worked as a nurse for 25 years across children’s cancer and general paediatric care and says the hospice environment provides a personal experience compared to a traditional hospital setting.

“While the hospital system is improving it is still a sterile

PALLIATIVE CARE

Warm and inviting spaces create a welcoming atmosphere for families at Bear Cottage

environment,” Andrea explains.

“I felt like at the hospital it was a conveyer belt where the child dies and you move on and that wasn’t a positive experience so that inspired me to come here and make a difference.

“It is a holistic approach here at Hummingbird House _ we cook and do the laundry and it is a welcoming atmosphere for the siblings.

“Some families come here and the parents are just so exhausted from their daily reality. They come here literally to breathe and they are so relieved to have help.

“They can still do all the medications and feeds if they want, or they can hand that responsibility over to us so they can just be with their child and read books or

swim in the pool or go out with the other family members.”

Narelle says it’s a similar situation at Bear Cottage.

“We care for the whole family with things like massage and haircuts and trips to the zoo to make the family’s stay as comfortable as possible,” Narelle says.

“We aim to create as many memories as possible with lots of photo opportunities, taking finger prints that are made into jewellery and recording heart rates edited with music as a keepsake.”

Both women say it is important to give people time to spend precious moments with their loved ones both before and after they die.

“It can be challenging but also very I SSU E 25 | SU M M ER 2020 61

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PALLIATIVE CARE

Right, Hummingbird House.

Below, The Garden of Remembrance at Bear Cottage

“I feel every day how lucky I am to be working in a job where I can make a difference to someone’s life“

rewarding work because you can see the difference it makes to a family and a child’s life. We become an extended family member in many cases,” Narelle says.

“We can bring some happiness and create special memories and we take away so much from what they are going through.

“One little girl recently had her entire room covered in fairy lights and pink and purple chiffon. We try to give them experiences like taking them to the beach if they have never seen the ocean or letting a child see a sunrise.

“We often say its like a ‘Club Med’ for the siblings with toys and art and craft. It’s not a clinical setting where

how significant it is in their lives. I don’t think you would return to the hospital if your child died there.”

Says Andrea: “I am honoured to work in the role and I count my blessings every day. It can be a big reality check especially when the child you are working with is the same age as your own child.

“I remember having a really in-depth conversation about end of life decisions with one family who had a child the same age as my son and then left work to pick they have to be quiet all the time. They him up from playing basketball and I meet other children going through similar cried all the way up the highway thinking circumstances and it realises death so it is how lucky I am. not something to be feared for the kids.”

“It sounds counter-intuitive but it is The pair agree that it is an honour to generally a positive and uplifting place work with families at a devastating time. to work with a lot of laughter and “I feel every day how lucky I am to lightness among the darkness.” be working in a job where I can make a The advice she would give to families difference to someone’s life,” Narelle says. in the situation is to reach out for help.

“I have seen and met so many amazing “Be proud of the things you are families over the years. One thing that hit achieving. Don’t be scared to be home a couple of years ago on a Friday vulnerable and show emotions and ask afternoon the door bell rang and there for help. was a man at the door whose daughter was “Don’t be afraid _ it is actually just the first child to die here at Bear Cottage a place where very tired people come and he just returned to say ‘hi’. to rest.”

“Some families stay in contact and that shows the importance of the place and Rachel Williams I SSU E 25 | SU M M ER 2020 63

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He ad ove r he els for

Inclusive Gymnastics Physical fitness, strength, balance, friendship, confidence and fun!

T

he latest research shows that gymnastics is of enormous benefit for the cognitive, physical and social development of people with disability.

But for thousands of participants across the country, it is also about having lots of fun!

And in good news for those interested, the opportunity for children with a range of special needs to take part in specialised programs is also becoming more readily available.

Gymnastics Australia General Manager, Member Services, Brad Low, says the organisation, combined with State and Territory Associations, have been working with Special Olympics Australia since 2017 to provide people with intellectual disabilities _ of all ages and abilities _ the opportunity to develop physical fitness, strength, balance, flexibility, coordination, confidence and friendships.

“This partnership was just recently extended for a further three years in a show of commitment to increase participation pathways for people with intellectual disabilities, such as assimilating Special Olympics competitions into state gymnastics competitions,” Brad says.

“Through our partnership with

6 6 SO U RCEKI DS .CO M . AU

A Special Olympics athlete competes on the beam apparatus.

Special Olympics Australia, we provide opportunities for athletes to participate and compete in Special Olympics Gymnastics, including Men’s Artistic, Women’s Artistic and Rhythmic Gymnastics.

“The partnership has also seen the Young Athletes Program for gymnastics; an inclusive multi-sport program that develops fundamental movement skills among children aged between two and seven years of age promoted to all Gymnastics Australia clubs.

“Gymnastics Australia is committed to growing the Young Athletes Program and providing this as a recreational pathway for children with an intellectual disability. Our aim is to grow this program in 2021.”

Gymnastics Victoria, Queensland and Western Australia are also working with Special Olympics Australia to provide

inclusive opportunities in state-based events which create participation and competitive opportunities.

Gymnastics Victoria has one of the biggest memberships in the country with 13,000 members in its disability programs _ its Gymnastics for All program incorporates Special Olympics, BlindSports Gymnastics, Autism Spectrum Disorder (ASD) Gymnastics and Therapists in Gymnastics.

GV Inclusion and Programs Manager, Carolyn Bell, says it’s important for the sport to be accessible to everyone and therefore their inclusion programs cater to a wide range of disabilities.

“Our partnership with Special Olympics provides opportunities for participants with special needs to compete in Men’s, Women’s and Rhythmic gymnastics,” Carolyn says.

“Aerobase is a modified aerobics

GYMNASTICS

G Y M N A S T S P OT L I G H T Australian squad members at the Special Olympics Rio 2016.

Lauren Menzies started gymnastics seven years ago as a way to make friends and get involved with sport.

The 17-year-old is now working hard to compete at an international standard.

Living with autism, Lauren has developed many skills

program and allows special schools and programs an opportunity to get involved in gymnastics with minimal equipment. Therapists in Gymnastics allow Occupational Therapists to utilise a gymnastics facility for their sessions and ASD Gymnastics focuses on the unique needs of individuals with autism.

"The Aerobase program provides a group competition for participating schools and the Special Olympics program provides a pathway for individuals who are interested in a more competitive experience.”

In 2010, Gymnastics Australia established a national resource called GymAbility for coaches delivering inclusive programs.

The program aims to support coaches and teachers to deliver movement programs that are inclusive for all, regardless of level of ability.

“The program considers individual needs with a focus on what participants can do, rather than on what they can't.

It aims to target the development of physical abilities,” she says.

“We value and promote participation by all individuals. Our coaches see each athlete as an individual with value and

diversity,” the said.

So why should you give gymnastics a go?

"Gymnastics is a common tool for developing a child’s fundamental movement,” Carolyn says.

“It aids in the cognitive development of children, helping them to develop their listening, problem solving, muscular strength, joint flexibility, balance, coordination and core strength required for everyday living. It also provides a strong base for further skill development that can be taken across into all sports.

Adds Brad: “It provides young children with the skills and experiences they need to develop their physical literacy, which is the basic knowledge and behaviours that give children and young people the confidence and motivation to lead active and healthy lives.

“Focusing on ongoing growth, physical literacy involves holistic lifelong learning through movement and physical activity. It delivers physical, psychological, social and cognitive health and wellbeing benefits for people of all ages.”

and is much more confident in herself as a result of regular participation, says her mum Kellie.“It has improved her physical balance and she is now very strong on the beam,” Kellie says.

“It has given her the confidence to speak up and be a mentor to younger kids with junior coaching of younger Special Olympics gymnasts.

“Gymnastics is her happy place and she has a strong bond with her coach Kerry.

“She wants to compete at the 2022 Special Olympics National Games after placing first overall at age 15 in the 2018 National Games in Adelaide, and then progress to the 2023 Special Olympics World Games.”

Kellie says Lauren would definitely recommend the sport to anyone with a special need.

“She hopes to prove that there is a place in sport for everyone, and anything is possible, regardless of any diagnosis,” Kellie concludes.

By Rachel Williams I SSU E 25 | SU M M ER 2020 67

Watche s R ead s

&

Books and shows and on our radar right now…

AN UNUSUAL BOY The central character of AN UNUSUAL BOY, Jackson Curtis, is an eleven-yearold boy who is neurodiverse. Told from Jackson’s perspective, as well as that of his mother, Julia, who is a dedicated advocate for her son, the story captures the joys and challenges of families living with neurodiversity and explores why embracing difference is a strong indicator of a healthy community.

MADE POSSIBLE These professionals have achieved astounding and awe-inspiring success. They’ve won national accolades in competitive fields such as film, theatre, music, fine art, campaigning and politics... and

HARDBALL Originally screened on ABC Me last year and now available to watch on ABC iView, Hardball follows fish out of water Mikey and his two misfit mates, Salwa and Jerry, played by actor Logan Reberger, who in real life has Multi Mini-Core Myopathy. His character, Jerry, has cerebral palsy. Salwa and Jerry’s goal is to make Mikey the sweetest-bestest-acest handball champ Western Sydney's ever seen.

like 1.5 million people in the UK today, they all also happen to have a learning disability.

In Made Possible, these eight remarkable individuals present their authentic experiences – in their own words – and show us what society misses out on by overlooking them.

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

CME | TheraSuit | Powerplate | Parent Education

M Y S T RO N G L I T T L E B O D Y My Strong Little Body is a physiotherapist’s 10 step guide to gently nurturing your baby’s development. The book has been given a glowing review from the Australian Physiotherapy Association and is a comprehensive step-by-step earlyintervention program to help gently guide your baby through all the major milestones.

Designed by Australian paediatric physiotherapist Alana Gardini, each milestone is broken down into tiny easy-tounderstand steps, helping your baby achieve them just like a physio would want them to. As nature intended. And with over 100 targeted and beautifully photographed play exercises, this ‘baby physio’ is made to be so much fun!

Locations: Adelaide Melbourne • Auckland Sydney • Brisbane Head office: 490 Brighton Road, Brighton SA To book your free assessment email admin@timmermansmethod.com.au or phone 0411 696 839

Sp e e ch Ap p s

WATCH, READ & APPS including: Childhood Apraxia of Speech (CAS), dyspraxia, autism, Down Syndrome,

you work on speech Awesome apps to help ent with your child. and language developm

SPEECH BLUBS: LANGUAGE THERAPY Speech Blubs is a voice-controlled

stroke rehabilitation, articulation, and phonological disorders makes articulation practice engaging and fun, so it doesn’t feel like therapy!

The instructions range from a very early level of language development, e.g. single

TA L K I N G P I E R R E T H E PA R ROT

word recognition, to much more complex sentence structures.

speech therapy app designed to help your child learn new sounds and words, and to practice speaking in a stimulating, educational environment. The app uses facial recognition technology and encourages your child to mimic what they are seeing with short, engaging videos, fun photo filters and animated content.

SPLINGO’S LANGUAGE UNIVERSE A high-quality, interactive game designed

A RT I C U L AT I O N S TAT I O N

Talking Pierre isn’t really a speech therapy

Another best seller, this app

pet who will repeat anything your child says

will help your child learn how to

– a great way to motivate your child and a

app but it’s so much fun! Pierre is a virtual

pronounce and practice the consonantal

bit of light relief in between the tougher

sounds in the English language with 6

stuff!

engaging articulation activities offering

SPEECH TUTOR

practice at the word, phrase, sentence and story levels.

This is a best-selling app for

The activities are so fun your kids will love practicing their sounds and forget they are actually "working" on their articulation.

by Speech and Language Pathologists to

improving articulation. It has dozens of videos that allow the user to see the placement of the tongue as sounds are

SPEECHBOX

made. The animations inside Speech Tutor

help children learn listening and language skills. With thousands of different word and

SpeechBox is an award-winning

view of tongue placement and positioning

sentence possibilities, Splingo the alien’s

articulation app for speech

and make them transparent. The app also

take the areas of the face that impede the

spoken instructions will guide your child

therapy word practice. This tool for children

allows the user to record audio and video as

through a galaxy of language learning.

and adults with various speech disorders

the user views the videos.

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Helping you live a dry and dignified life Bandanas

• unisex onesies to help keep wandering hands out of nappies & pants

• tag-free range includes tummy access for tube feeding & back zip styles

• deters inappropriate undressing & other challenging behaviour

• available in sizes for kids & adults with various styles to suit all seasons

www.wonsie.com.au

PLUS so much more!

Bed Pads

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Wheelchair Raincoat

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A b il it y 8 A p p

EVERYTHING IN ONE PLACE • Manage your disability journey not just your NDIS Plan • You, your family, your team, collaborate!

• Succession planning • Schedule appointments and activites • Notifications and chat sessions

NEW VERSION

• Create care plans and task lists • Email invoices and receipts to the app • Single place for all your documents

• In App payments • Single touch payroll • New accessiblility standards • New user interface

• Manage employers and contractors

info@ability8.com.au ability8.com.au

facebook/ability8

+61 490 848 908

instagram/ability8app

Specialist Allied Health Services for your child.

At LiveBig, we deliver flexible support tailored to your child’s individual needs and preferences.

Our services include occupational therapy, speech pathology, exercise physiology, psychology, physiotherapy, assessments and NDIS plan support.

Get in touch today to discuss how we can support your family.  1300 390 222

 www.livebig.com.au

We specialise in fun and functional equipment for special needs children across Australia. » More than 150 products available for trial. » A fully-qualified team passionate about helping children live, laugh and play.

» Product consultant based in North Qld

covering Cairns, Townsville, Mackay and all areas inbetween.

WE ARE YOUR

ONE STOP PAEDIATRIC SHOP

» We understand the NDIS. Ask us for

advice on equipment trials & assessments.

» We regularly cover regional & rural areas

of QLD including Gympie, Maryborough, Hervey Bay, Bundaberg, Gladstone, Rockhampton, Toowoomba, Roma and all areas in between.

Please see our website for details on our regular road trips.

07 5597 4321 | info@specialneedssolutions.com.au

You First

Disability Services

Find support that suits Your

STYLE

www.Youfirstservices.com.au #mysupportinstyle

SUBSCRIBE NOW! And have Source Kids delivered right to your door.

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

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3 4 SO U RCEKI DS .CO M . AU

A new driving force behind safe transport for children with disability Complete the survey to WIN one of five $50 vouchers Transport enables families to get out and about in community and it’s especially important that all children, including those with disability and medical conditions, travel in the safest way possible.

MACA knows how difficult it can be for parents and health professionals to find the information, support and vehicle restraint products needed to ensure children with disability and medical conditions can travel safely and comfortably.

But change is on the horizon.

As a new Australian not-for-profit organisation, MACA is dedicated to advancing the rights of children with disability and medical conditions to safe and accessible transport.

MACA will give parents and health professions access to trustworthy information about:

• Best practice transport options • The safety of restraint products • The legal requirements for travel in each state and territory

This information will be available from early 2021 through MACA’s one stop shop website and education activities.

Your experience is important to MACA. This is why we need you to take our short survey.

Every parent should have the peace of mind that their children are travelling safely and comfortably.

For more information, get in touch with MACA at helen@macahub.org

More info available here @linkedin.com/company/macainc

Curtin University Human Research Ethics Committee (HREC) has approved this study (HRE2020-0257).

VIC / TAS

Planting today’s seeds for tomorrows future We are running a program from the 21st - 24th of December, in St Kilda, Melbourne.

Giving Tree is an all-inclusive holiday program for children between the ages of 3-6.

We focus on providing individual support to each participant, as we tailor our programs to be accessible.

The program will be for children with and without disabilities, to promote inclusion from a young age.

givingtree.org.au

Looking for a dentist for your child?

Providing specialist care for your child in a caring environment.

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

Dr Linda Huang B.D.Sc., M.Phil,D.Clin.Dent. (Paed)

181 Balcombe Road, Beaumaris Ph. 9583 1378

reception@happysmilesforkids.com.au HSKsMrMiso

hsfk_mrmiso

INSPIRE, EMPOWER, UNITE Mums raising children with special needs We invite you to join the most exclusive, inclusive club - Source Mama.

Unapologetically candid, uncut + heartbreakingly real, whilst uniting, elevating and fiercely empowering. Join the greatest pride of lionesses in our community that supports mums raising children with special needs.

Join the Source Mama community now! @sourcemama sourcemama.com.au SOURCE MAMA 74 SO U RCEKI DS .CO M . AU

Nova’s Rovi

VIC / TAS

Following last month’s launch of the ROVI A3 MPS MINI Children’s Powerchair, little Nova was thrilled to become one of Australia’s first ever users! With its amazing combination of function and style, the ROVI gives Nova more freedom than ever to do the things she loves most!

Visit us online to find out more!

+

Wheelchair Seating

By

Specialising in Powered Wheelchairs with Scripted Seating.

Make a Splash!

The already brilliant Starfish Pro Shower Commode has been taken to a whole new level of excellence in positioning, comfort and safety with the Dreamline Splash backrest, laterals, and headrest.

The perfect answer for cases of severe Scoliosis, Kyphosis or Lordosis where insufficient back/trunk support is offered by standard commodes!

Available for immediate trial!

1300 369 096 urgoform.com.au Accredited NDIS Provider 4050055669

THERAPY AT ALLOWAH Allowah Disability Support Services is an NDIS accredited disability support provider. We provide a huge range of supports, so that your child gets the care they need...all in one place.

Psychology Services & Behaviour Support Allowah offers quality psychological supports, services and assessments, delivered by our suitably qualified clinicians. We work with families to find out how we can best help.

We provide: • Mental health services and counselling support for the management of anxiety, depression, grief, stress, emotional regulation difficulties, PTSD and more.

• Evidence-based assessment to assist in the diagnosis and treatment of cognitive disabilities, learning difficulties or disorders, ADHD and a variety of mental health conditions.

• Personality assessments • Comprehensive assessment including Functional Behaviour Assessments • Development of interim and comprehensive behaviour support plans

Occupational Therapy Our Occupational Therapists operate as part of our therapy team, working to promote participation and enjoyment in the activities of everyday life.

We provide: • Therapy intervention for development of hand skills.

• Therapy intervention to increase a child’s participation in leisure activities, improving play skills and developing social and emotional capacities.

• Assistance to choose aids and equipment (including transfer equipment, seating and wheelchairs, bathing and showering equipment, beds and mattresses) • A range of assessments including: Occupational Therapy Assessment, Sensory Assessments, Functional Living Skills Assessment, Developmental Assessment (fine and gross motor), assessment and trial for wheelchairs and other equipment, and Complex Wheelchair and Seating Assessment.

Physiotherapy

Dietetics

Physiotherapy at Allowah offers a range of services, with a particular strength in supporting children with very complex needs.

Our Dietitian is qualified and skilled in paediatric nutrition and dietetics, with a wealth of experience working with children with complex disabilities. Offering expertise in both oral and enteral nutrition, our Dietetic services include:

Our skilled physiotherapists provide expert support with: • • • • • • •

Early Intervention – gross motor development Prescription of walking aids and standing frames Body garment recommendation Bike riding training and recommendation Manual handling education and training Serial casting (to help foot positioning), Prescription and recommendation of AFOs and other foot splints • And more!

• individual assessment and advice: in person, home and school visits, and/or teleconference • detailed nutritional analysis for oral and enteral intake • comprehensive anthropometric assessments • tube feeds and nutritional supplements at special prices using the Home Enteral Nutrition scheme • collaborative nutritional management and care with the dietitians of the Sydney Children’s Hospital Network.

Telehealth Available!

Contact us to find out how these services can be funded through NDIS or alternate payment options.

76 SO U RCEKI DS .CO M . AU

NSW / ACT

Support Coordination Allowah offers Support Coordination to assist children, families and carers with the planning and management of the range of services you receive. This is offered for all levels of complexity, from basic help to high level coordination for very complex situations.

Our experienced Support Coordinator offers: • Assistance in the transitioning of young people with disabilities from paediatric to adult care services.

• Personalised support to empower families with the skills and information to make their own decisions about the kind of services they receive.

• Help to understand your plan and build the skills that you need to implement and utilise NDIS funding efficiently and cost-effectively.

• Coordination and review of a wide range of your chosen services to increase your capacity to maintain a good quality of life.

• Guidance in exploring potential resources and external services when needed

Speech Pathology Our Speech Pathologist diagnoses, manages and treats children who are unable to communicate effectively or who have difficulty with feeding and swallowing.

At Allowah, we provide our services with a child and family-centred approach. While delivering care and support, we also seek to provide emotional and social support to each child, their families, and carers.

MyTime Parent Support Group Sometimes you just need to talk to people who ‘get it’. That’s one reason our MyTime support group continues to grow. We currently meet online each week and welcome anyone who cares for a child with a disability to come and chat.

Holiday & Weekend Program Allowah’s Holiday Programs are a great way for kids to spend time doing a range of fun activities in a safe and caring environment. We have adapted our program to run in a way that allows the fun to continue whilst following the latest COVID-safe health advice.

Respite If your child has complex medical needs and you are looking for respite, talk to us. We have a number of options available and are highly skilled in looking after children with complex disabilities and medical needs.

Post surgery care

WE’RE HERE

FOR YOU Find out how we can help

Lots of children with complex disabilities need surgery and care for the first few weeks after surgery can be daunting. We are here to help with private hospital admission or respite care provided by our clinical nursing team.

G FUN HAVIN E SCHOOLRAM! AT TH DAY PROG HOLI

Contact us: 02 8877 3400 | admin@allowah.org.au

I SSU E 24 | S P R I N G 2020 77

QLD

I SSU E 24 | S P R I N G 2020 79