Source Kids Spring 2021 by Source Kids

O CI

AT ION

ISSUE 28 / SPRING 2021

N DIS

BUDGET C AT E G O R I E S EXPLAINED

IDENTIFYING D E V EL OP MEN TA L ISSUES

FUN ACTIVITIES AT H OME To h e l p development!

PRODUCT REVIEW

st rolle rs

Down syndrome

SPOTLIGHT ON

SLEEP PROBLEMS AND SLEEP DISORDERS

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contents

44 Your sleep tips

46 Sweet slumber products

50 Career pathways

O CI

AT ION

ISSUE 28 / SPRING 2021

N DIS

BUDGET C AT E G O R I E S EXPLAINED

We love

Support

IDENTIFYING D E V EL OP MEN TA L ISSUES

Welcome

FUN ACTIVITIES AT H OME To h e l p development!

DOWN SYNDROME

PRODUCT REVIEW

st rolle rs

10 All about Down syndrome

Down syndrome

SPOTLIGHT ON

SLEEP PROBLEMS AND SLEEP DISORDERS

and other

Disability and employment

resources to help

Managing

NDIS Plan budget

meltdowns

categories

explained!

Assisting children

with special needs

Identifying a developmental issue

advocacy and the

fight for community

Fun activities you

inclusion

can do at home to

to achieve a level of continence

62 Sport spotlight: Modified Rugby

help developmental

milestones

Apps to help develop

living with Down

independence and

syndrome

Sleep feature

organisations

Sarah’s story –

34 Sleep problems and

living skills

70 Watches & reads

sleep disorders

Stroller product

Strategies for

review

a more settled

night’s sleep

Win

FUN STUFF

THE MIGHTY CHILDREN’S BOOK TELLING T H E S T O RY O F L I F E W I T H A D I S A B I L I T Y The Adventures of Mighty Owen is helping others understand how the world can be processed differently when you have a disability. This wonderful book shares the story of Mighty Owen and Lord Angry Pants while navigating therapy sessions, hospital appointments and life in general with cerebral palsy and autism. Born at 32 weeks and weighing only 880 grams, Owen entered the world much earlier than planned. With illustrations by Owen and words contributed by his older brother, Liam, The Adventures of Mighty Owen was completed and released into the world. We think you are going to love it! mightyowen.com.au @mightyowen.com.au

STRETCHY SAFE SPACE Not only a sensory learning tool but also a great place to play! The flexibility of the panel places children in charge of their sensory feedback, enabling them to play and learn in a calm and enjoyable environment. Comes in an easy-care bag and can be set up on any compatible surface, perfect for home, holidays or classrooms. When children interact with MyBurrow® they remain in one location, allowing for ease of supervision thereby reducing

A S W I N G S E T T H AT A P O L A R B E A R C A N H A N G F RO M ? The Plum Play® Gibbon Swing Set features 2 swing seats, a swinging climbing rope and a

parental “where are they now?!” anxiety. MyBurrow® may be purchased privately or through your NDIS consumables budget. Available in 3 sizes and various colours. Email to arrange your quote: info@myburrow.com.au myburrow.com.au

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hanging rope ladder. Siblings won’t need to fight over taking turns because there’s heaps to do all at the same time! The swing frame has been tested to hold 500kg for over 1 hour with no damage – that’s approximately the same weight as a polar bear! So, whether it’s multiple kids hanging off the swing set, or a heavy special needs swing, the kids get the freedom to play to their heart’s delight while you have your peace of mind. Use SOURCEKIDS10 upon check-out to get 10% off on all Plum Play® (except on Sale items or Spare Parts) plumplay.com.au @plumplayaus

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B I L L I E B U C K E T H AT H E A D P ROT E C T I O N B Y R I B C A P Live your life to the fullest without the worry of a head injury because of a medical condition or stability issues. The billie bucket hat helps you live an active lifestyle while staying safe. Check out the new Billie from Ribcap, along with the baseball cap and beanies at dejay.com.au

I SSU E 28 | S P R I N G 2021 5

WELCOME

magazine

H e l l o Sp r in g !

ow good does that crisp Spring air feel at the moment and all the spring scents floating around. It’s one positive we can all enjoy right now with so much of our country in lockdown…again. I want to send all our Source Kids love to everyone currently doing it tough around the country due to lockdowns, border restrictions and just generally having their lives impacted. In some news from us, we are thrilled to let everyone know that we are now a registered NDIS provider, meaning you can use your funds to subscribe to our mag and make sure you’re up to date with all the latest info – head to our subscribe page online at sourcekids.com.au for all the details. This month also sees us head west with the Source Kids Disability Expo being held in Perth for the first time! We can’t wait to meet everyone on the west coast and we have an incredible line up of products and services, speakers and performers and fun zones to enjoy across the two days. See you there on 10-11 September, Perth! In this issue of Source Kids we put the spotlight on Down syndrome focusing on the facts and information around the condition, how advocacy is improving community inclusion and some great organisations and support groups out there to lean on. We also cover sleep (or more accurately, the lack of!), identifying developmental issues in your child, career pathways, and we have a full review of strollers on the market. And of course there is loads more in there than I’ve mentioned, so sit back and I hope you enjoy the read. Much love,

6 SO U RCEKI DS .CO M . AU

Emma x

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, Kelly Wilton, Ariella Lew, Emily Hayles, Down Syndrome Queensland, Sleep Health Foundation, Natasha Ward, Raelene Dundon, Nicola Mitchell, Leap In! 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 DIGITAL MARKETING Rebecca Pinese rebecca@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

N E W M O D I F I E D B A C K PA C K S Meet Kenzie Koala and Preston Pug, the 2 new styles in the Tubie Fun modified backpack range! These great backpacks feature a side opening to allow for tubing to be easily accessible for connecting up; an internal velcro strap which is used to help secure the bottle, an internal clip which can be used to hang a bottle or insulated feed bag and a large front pocket which has an opening to the main compartment of the bag. This is ideal for placing the pump in the front pocket and having line access to the main compartment where the feed can be accessed. tubiefun.com.au

B E A U T I F U L C R A F T E D RO U T I N E A N D H O M E H E L P C H A RT S Second Scout is obsessed with making life easier for families. Their concealed magnetic timber routine helpers, planners and home organisation solutions are picture based, meaning they can be interpreted by children of all abilities. Crafted from sustainably grown timber, the simple, modern designs empower and promote independence across the whole family. secondscout.com.au

@secondscoutau

DESIGNING, CONSTRUCTING AND C O L L A B O R AT I N G O N A M E G A - S C A L E Big Blue Blocks from Mud Kitchen are a

PJAMA RANGE – S TA Y D RY , D I S C R E E T LY !

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with materials that keep the bed dry in case of a

foam blocks come in a variety of shapes

urinary accident while sleeping. Made with Tencel,

and sizes for you to build and let your

a material that is super-absorbent in critical areas,

imagination take flight. Cause and effect,

together with an outer waterproof and soft layer

problem solving and self-expression are

that breathes. The inner layer is soft and smooth

just a few of the key skills that the Big

and as Tencel has capillary breaking properties it

Blue Block enables! Home or school, we

absorbs fluid effectively. The waterproof Pjama

think these make a great addition to any

bag is specifically designed for putting away Pjama

environment. mudkitchen.com.au

discreetly and practically to be washed when

@mudkitchenaustralia

getting home. pjama.com.au

THE WORLD’S MOST ACCESSIBLE VEGE GARDEN I S N O W O F F I C I A L LY N D I S R E G I S T E R E D ! Vegepod is a multi-award winning, self-contained and self-watering raised garden bed designed to overcome all accessibility challenges and help ALL people with lifestyle and therapeutic gardening. Customised low cut trolleys are available on request, so our kids can develop their green thumb at their own level. With the added benefits of working on fine and gross motor skills together with sensory elements, we think this is a terrific education addition in your own back garden and a fun one too! Don’t forget to check out Vegepod’s free support programs to accompany any Vegepod – GrowAbility program and SeniorGrow. vegepod.com.au

@Vegepod

I SSU E 28 | S P R I N G 2021 7

The time is right now! Astris PME understands that in many cases families need their Assistive Technology fast, so that your child can get on with their therapy, and you can take advantage of the life-improving equipment straight away. That is why we oﬀer a range of Covid-safe trial and delivery options, so that your applications for NDIS funding are not delayed. We also carry a wide range of AT Inventory, right here in Australia. We call this our “Quick Ship Range”. And we have JUST RELEASED A RANGE OF EQUIPMENT THAT IS AVAILABLE FOR HIRE OR RENT TO OWN. Because we understand how frustrating delays in funding or supply are and want to help you get your equipment fast.

Manual Wheelchairs

Tilt-In-Space Wheelchairs

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Power Assist

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Walkers

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Positioning/ Sleep Sytems

Hygiene

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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Activity Chair, Clinical Positioning Chair

Madita-fun, Integrative Therapy Chair

Smilla, Indoor Seating System

PPod, Seat Support System

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1300 212 192

ALL Down syndrome ABOUT There are approximately 13,000 people in Australia who have Down syndrome and the birth rate is one in every 1,100 births. The following information from Down Syndrome Australia will help you if your baby or unborn child has been diagnosed.

10 SO U RCEKI DS .CO M . AU

DOWN SYNDROME

I SSU E 28 | S P R I N G 2021 11

irstly, it’s important to understand that every person with Down syndrome is an individual. Just like everyone else they will have different things they are good at and other things that they find harder. People from all different backgrounds and ages have children with Down syndrome – it’s a genetic condition, not an illness or disease. It is nobody’s fault. There is no cure, and it does not go away. Down syndrome occurs at conception. Our bodies are made up of trillions of cells; in each cell there are tiny structures called chromosomes and the DNA inside these chromosomes determines how we develop. Most people have 23 pairs of chromosomes in each of their cells (46 in total) but people with Down syndrome have 47 chromosomes in their cells. They have an extra chromosome 21, which is why Down syndrome is also sometimes known as trisomy 21.

People with Down syndrome may have: • a reas of strengths and other areas where they need more support, just like everyone else in the community • some level of intellectual disability • some characteristic physical features • i ncreased risk of some health conditions (many of which are treatable) • some developmental delays.

How is Down syndrome diagnosed? Screening for the condition can be carried out before a baby is born. If Down syndrome is not diagnosed before the child is born, doctors will usually identify a baby as having some features which are common to the diagnosis. This can be confirmed by a blood test. Prenatal testing is offered routinely to most women in Australia, but it is your 12 SO U RCEKI DS .CO M . AU

choice whether or not to have prenatal testing and it is important to take time to ensure that you have understood all the correct information about the tests, their risks and limitations and the conditions that are being tested for. You should only have testing if you have given your permission. Down Syndrome Australia has an easy-to-understand, factual and balanced factsheet for anyone considering prenatal testing which explains the different types of screening tests that are used along with resources for support and information. The factsheet can be download at downsyndrome.org.au/wp-content/ uploads/2020/02/DSA-prenatalfactsheet-C06.pdf For more prenatal information the Down Syndrome Federation provides

support and information for expecting parents. The national 1300 number (1300 881 935) will connect you to your local state or territory Down syndrome organisation. Staff at the organisation can provide you with non-directive information and answer questions. They can also arrange for you to talk to a parent of a child with Down syndrome.

What impact can Down syndrome have on health? Many babies with Down syndrome are born without any health problems at all. However, some newborns may experience some health complications, such as: • low muscle tone • a heart defect • digestive or feeding issues.

Types of Down syndrome There are three types of Down syndrome, which can be identified by a blood test, usually taken after birth.

TRISOMY 21

TRANSLOCATION DOWN SYNDROME Three to four per cent of people with Down syndrome have translocation Down syndrome. In this type of Down syndrome, a partial chromosome 21 attaches itself to another chromosome. This variation does not significantly change the impact of the condition.

Ninety-five per cent of people with

Sometimes, translocation Down

Down syndrome have Trisomy 21.

syndrome is hereditary, so parents will

In this type of Down syndrome,

usually be advised to have blood tests

every cell in the body has an extra

and genetic counselling.

chromosome 21.

DOWN SYNDROME

MOSAIC DOWN SYNDROME

One to two per cent of people with Down syndrome have mosaic Down syndrome. In this type of Down syndrome, which occurs after conception, only some cells have the extra chromosome 21. The rest of the cells have the usual genetic composition. Sometimes this means that fewer characteristics may be expressed, and possibly to

Some babies and children with Down syndrome may present with other health concerns such as: • respiratory issues • vision problems • hearing difficulties. If your baby has a particular health concern, you will need to seek more specific and detailed information. Please talk to your health care professional about any of these medical matters, and ask for information as you need it.

What will life be like for my child? Most young people growing up with Down syndrome today will lead quite ordinary lives in the community. Some people may not need much help to lead an ordinary life, while others may require a lot of support.

Having an intellectual disability When a baby is born, there is no way to tell what level of intellectual disability the child may have. Nor can we predict the way in which this may affect a person’s life. However, we do know that having Down syndrome will not be the most important influence on how that person develops and lives their life. Instead, family, environmental, cultural and social factors will shape their life, just like everyone else.

Communication A lot of people with Down syndrome speak fluently and clearly, however – for many – speaking clearly can be difficult and they will need speech and language therapy to achieve this. Some people will find it very difficult to develop language or speak clearly at all. However, regardless of a person’s ability to speak, people with the diagnosis can understand a lot more than they can express with words. This often means that their abilities are underestimated, which can lead to frustration and isolation.

Living an ordinary life While some aspects of life may be more challenging than for a typically developing person, such as healthcare and education, people with Down syndrome now commonly take part in mainstream school and post-school education, sports, performing and visual arts, community volunteering and the workplace. A growing number of people with Down syndrome live more independently and are choosing to form relationships and get married. Life for people with Down syndrome these days is very different from how it used to be and looks even more hopeful for the future. Many parents worry about how a child with Down syndrome will affect their family. Of course, every family is different,

a lesser degree.

but personal stories and research show that most families that have a child with Down syndrome are stable, successful and happy and that siblings often have greater compassion and empathy. In fact, some studies have shown that families of children with Down syndrome have lower rates of divorce than the national average.

Support for new parents Many new parents find it is helpful to connect with another parent who has been through a similar experience. The state and territory Down syndrome associations provide support, information and local linkages to other families. Personal visits to families at home or in metropolitan hospitals are often also available. New parent information packs are provided free to all new families and your local Down syndrome association will let you know about upcoming events in your area.

The above information has been adapted from information available on the Down Syndrome Australia website. For more indepth information, factsheets, support and resources visit downsyndrome.org.au I SSU E 28 | S P R I N G 2021 13

Down syndrome and the fight for

advocacy community inclusion

Around 200 babies born in Australia each year have Down syndrome and while major medical gains have been made and supports have improved, a leading advocate says their biggest challenge is community inclusion.

14 SO U RCEKI DS .CO M . AU

own Syndrome Queensland is just one of the country’s state and territory organisations working under the leadership of Down Syndrome Australia to alter community perceptions and generate greater equality. CEO Darryl Steff has been in the role at DSQ for 4 years, and while he loves his job, he hopes it one day becomes redundant. “Our goals are to continue the work we do and to influence change in the community so that people with Down syndrome, and their support networks, are adequately supported to achieve their goals,” Darryl says. “Our long-term goal, or call it Nirvana, is that organisations such as DSQ are no longer needed as the community is automatically inclusive of all differences and supports everyone regardless of disability.” Down syndrome is a genetic disorder caused when abnormal cell division results in extra genetic material from chromosome 21. It causes a distinct facial appearance, intellectual disability and developmental delays. Darryl says people with Down syndrome are valuable and contributing members of their communities and it was an honour to empower individuals to fulfil their potential.

DSQ has more than 20 staff who are available to assist around 2500 people across all age groups throughout the state. They provide information and support from prenatal diagnosis to early intervention to education, behaviour, communication, NDIS, relationships, employment, independent living and health. “We are also a registered NDIS provider and provide programs from social capacity building activities to online programs and capacity building (post-school) programs,” Darryl says. “Over 3000 people attended over 400 of our NDIS Programs in the last 12 months and we supported over 1000 people with information, support and resources.” He reports that the NDIS has made a positive change in terms of assistance. “As with all major new initiatives it is not perfect, but by taking a goals-based approach with the individual with Down syndrome having the choice and control over the supports they receive, it is a system that is definitely heading in the right direction,” he says. “In terms of health supports, people

DOWN SYNDROME

with Down syndrome still generally have concerns that women are not being given rights as anyone else is what’s needed to worse health outcomes than the general appropriate, balanced information. break down barriers, Darryl believes. population, and therefore more work needs “Some families who receive a diagnosis “Our experience has shown that people to be done in this area. Down Syndrome of Down syndrome have told us that with Down syndrome want the same as Australia have a Health Ambassador doctors questioned their choice to continue anyone else in the community – things program currently running which has their pregnancy, or have told them that like a job, friends, independence, a people with Down syndrome working to their child would have a lifetime of relationship, happiness etcetera and that educate health practitioners if they are given the on how best to interact with right opportunities, and “Our long-term goal, or call it people with Down syndrome.” appropriate supports, all of Nirvana, is that organisations such Prenatal testing for Down these things can be achieved,” as DSQ are no longer needed as the syndrome has been available he explains. since the late 1960s when “All too often though, it is community is automatically inclusive women over the age of 35 were the opportunities that do not of all differences and supports offered amniocentesis to test exist due to the attitudes of everyone regardless of disability.” for Down syndrome. the community. Organisations Non-invasive prenatal such as Down Syndrome screening (NIPS) is now available as early suffering,” Darryl reveals. Australia, and its Federation Members as 10 weeks’ gestation to screen for various “Down Syndrome Australia is currently need to be adequately resourced by the chromosomal conditions, through an preparing a submission to the Disability State and Federal Government in order examination of maternal blood. Royal Commission on this topic in order to work towards improved community Darryl says that there is no doubt that to improve the information provided at perceptions.” the introduction of NIPS has reduced the time of prenatal testing, and here in the number of births of children with Queensland we are in discussions with By Rachel Williams Down syndrome across the country. But the Health Department to improve the while many women decide to terminate a education of healthcare professionals.” To contact your local State or pregnancy on discovery of the condition, A broad community acceptance that Territory Association, visit many do not. Darryl says there are people with the disability have the same downsyndrome.org.au I SSU E 28 | S P R I N G 2021 15

DOWN SYNDROME

sarah's story Living with Down syndrome As older parents, Cally and Nigel Ward always knew the risk of having a baby with Down syndrome. But not once did it deter them from creating the baby of their dreams. Their baby, Sarah, is now 12 and is an integral member of the tight-knit family of three. And they would never change her for the world. “When Sarah was born, I was nearly 40

vision for the future where Sarah will

and my husband was 52, so we are very much

be supported.

older parents,” Cally explains.

“The biggest focus for us in the coming

“Having Sarah definitely keeps us young.

years is in forming friendships, as her friends

We joke we will never be headed for the

will become her family. The chances are she

retirement home, as we are still on the

There are parents ahead of you on the

will live in a semi-supported environment

school run!”

journey who offer great advice. We really

with other friends with intellectual disability

couldn’t do it without them.”

and that together they will be a strong,

The couple chose not to have any invasive testing during their pregnancy as the outcome made no difference to them. “Even knowing it was a chance, when

Sarah didn’t walk until she was two years

tight-knit group where they combine their

old but the family hasn’t let delays define

different skills and resources to care for each

her. They instead remain thankful she hasn’t

other with some support and guidance.

Sarah was delivered I immediately saw she

experienced any major health issues, given

had Down syndrome and was shocked,”

around 40% of children have some form of

and bonds that will support her and enable

Cally admits.

concern around their heart.

her to live a meaningful life, contribute to

“Sarah was born by emergency caesarean

“I learned as time went on that milestones

just after midnight at Easter, and the first

are achieved when you get there, and you

24 hours are very hazy for me – it was all

can’t rush it,” Cally says.

quite dramatic.”

“Sarah understands virtually everything

Cally says soon after they arrived home

that is said to her, which is called receptive

from hospital they were visited by another

speech. Her expressive speech, where she

mother with a 2-year-old child with Down

chooses to speak, is still developing”.

syndrome – and so began their journey

She has a vocabulary full of nouns, but

“We hope she makes the sorts of friends

society and be happy – which is really all any parent wants for their child.” For those who may be about to start navigating the journey, she offers this simple reflection. “When Sarah was small, I would hear other parents saying that they wouldn’t change their child for the world, meaning change

of support from the Down syndrome

struggles to construct a sentence. We work

the Down syndrome. At that stage I was still

community.

on it every day. We have the most amazing

coming to terms with Sarah’s diagnosis and

speech therapist who has been a part of

I really didn’t understand what they meant.

our daughter, who just happened to have

Sarah’s life off and on since she was born.

Now I get it. Now I wouldn’t change her.

Down syndrome, rather than Down syndrome

We don’t stress about it. It will come.”

“It was pivotal in us accepting Sarah as

defining her,” she says. “There comes a point where your own family cannot support you in the specifics of having a child with special needs and you

Cally’s concerns for Sarah’s future revolve

“Down syndrome is part of who she is. She is strong. She is uninhibited. She lives in the

around when she and Nigel are no longer able

moment. There is much to learn from her

to support her.

and if she didn’t have Down syndrome, she

“Sarah will face a time in the world when

wouldn’t be Sarah. So, accept and celebrate

need your DS family to help you find your way.

we are not around, and that used to wake me

and move forwards always with what is

“If you’re having a bad day, someone else

up in a cold sweat at 3am. But the advent of

possible and positive in your heart, not with

the NDIS has gone a long way to creating a

fear and apology.”

completely understands and has perspective.

16 SO U RCEKI DS .CO M . AU

Easy On Shoes

Adaptive shoes for kids and adults are now available at

I SSU E 28 | S P R I N G 2021 17

Strollers

trikes

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walkers

frame runners

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DOWN SYNDROME

SUPPORT ORGANISATIONS AND OTHER RESOURCES TO HELP Whether you’re just starting out on your journey, are right there in the middle of things, or simply want to know more to be able to support a friend or family member, here are some organisations and other resources that can assist with info, advice and more…

D O W N S Y N D RO M E A U S T R A L I A

C E L E B R AT E T 2 1

Down Syndrome Australia and its

The Celebrate T21 books are a collaborative

PA R E N T S O F C H I L D R E N W I T H D O W N S Y N D RO M E

State and Territory Associations is

yearly project with wonderful families and

This is another huge Facebook group

the country’s leading organisation

amazing photographers across various

with over 21.4k members. With a focus

providing support, information

countries. These books are gifted to

on being a space for parents of children

and resources to people with Down

families receiving a prenatal or postnatal

with Down syndrome that group states

syndrome and their families. The

(up to 3 months) diagnosis of Down

that it is a safe place to discuss almost

Down Syndrome Federation is made

syndrome, as part of a gorgeous Celebrate

anything DS related – without fear

up of state and territory organisations

T21 gift pack. celebratet21.com

of judgement – just support!

who provide localised services and supports and Down Syndrome

@celebratet21

parentsofchildrenwithdownsyndrome

Australia provides national information

21 GIFTS

I N C L U S I O N F O U N DAT I O N

and advocacy on behalf of the

21 Gifts is a kindness project established to

The Inclusion Foundation is a for-purpose-

federation. Start at their homepage

rewrite the narrative surrounding a child’s

charity that champions the inclusion of

for a an overview and then use the map

diagnosis. This wonderful organisation

people with Down syndrome. They see an

to visit your local state or territory

partners with over 120 hospitals around

inclusive world, where people with Down

association page for information about

Australia to rewrite the opening act of a

syndrome are equal, active, and respected

services and supports in your area.

T21 diagnosis through a strengths-based

members of society and this is brought

downsyndrome.org.au

approach. They provide free welcome-

to life through their programs; emotion21

DSA EVENTS

to-the-world suitcases to babies and

and impact21 which run throughout

also educational seminars/resources.

Victoria with plans to expand across the

The various Down syndrome

Health professionals deliver the suitcases

country. inclusionfoundation.org.au

organisations around the country

to families at the point of diagnosis to

put on some wonderful events for

balance the medical information with

E M OT I O N 2 1

families throughout the year including

hope, inspiration and lived experiences.

Supported by the Inclusion Foundation

family fun days, other regular meet

twentyonegifts.com

(above) Emotion21 uses the latest

ups, education sessions and more.

THE LUCKY FEW PODCAST

research and techniques to develop and

T21 MUM AUSTRALIA

For 3 seasons, Heather Avis, Micha Boyett,

specifically for people with Down

and Mercedes Lara has become even

syndrome. Their innovative programs are

Since 2013, T21 Mum Australia has

closer friends than ever before. Together,

offered across nine Victorian locations:

been connecting mothers of children

they take on conversations in the Down

Ballarat, Brunswick, Cranbourne, Geelong,

with Down syndrome from all around

syndrome community that not only parents

Greensborough, Hoppers Crossing,

Australia. Their Facebook support

want to hear, but need to hear and share

Kew, Pascoe Vale and Rowville as well as

groups create safe spaces for mothers

as they shout the worth of loved ones with

virtually. inclusionfoundation.org.au/

to share their trials and triumphs, while

Down syndrome.

emotion21

creating lasting friendships with other

theluckyfewpodcast.com

women who just get it.

D O W N S Y N D RO M E S U P P O RT G RO U P

downsyndrome.org.au

t21mumaustralia.com @t21mum on Facebook

deliver dance, fitness and health programs

A supportive Facebook community of over 13.8k members of families with loved ones with Down syndrome.

Down Syndrome Support Group

I SSU E 28 | S P R I N G 2021 19

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

NDIS Plan budget categories explained! You’ve got your NDIS plan but what now!? If you’re new to the NDIS (and if you’re not!) your child’s plan may seem confusing, and a little overwhelming to know what each budget category means.

o help you get to grips with it all, the team at Leap in! have provided us with a simple rundown of how your NDIS budget and plan go hand in hand. NDIS funding categories Your NDIS budget will likely be broken up into three main budget categories or ‘support purposes’ which can all be planned to help you throughout your NDIS plan. These are: ➜ Core supports ➜ Capital supports ➜ Capacity Building supports Core supports NDIS Core supports are activities that help you in your everyday life. This area of your NDIS plan has four budget categories which can be flexible to accommodate your individual needs. 1 | Assistance with daily life includes making household decisions, looking after your personal care, cooking and cleaning. 2 | Assistance with social and community participation can include activities or courses that help you connect and socialise with others. Art classes, sports coaching or vacation camps that have mentoring, skill development, peer support or capacity building components are covered here. 3 | Consumables helps you cover everyday items and services. These could include interpreting and translating services as

well as continence and nutrition related items. 4 | Transport helps to cover costs associated with specialised schooling or education programs, reaching your place of employment or participating in recreational or community activities. Capital supports A Capital support provides funding for equipment, home or vehicle modifications, which are split into two categories. The NDIS is very specific in what this funding can be used for and it must be used as it is allocated. Assistive technology (AT) covers any device that allows you to do something that you wouldn’t be able to do without it or increase the ease or safety of things you do. AT is split into four levels to describe the complexity of the equipment so that you can identify, find and access the AT you need: Level 1: Simple, low risk Level 2: Standard AT Level 3: Specialised AT Level 4: Complex AT solutions. Depending on the complexity of your AT, you may be required to undergo an AT assessment before you can access NDIS funds for the equipment. Home modifications are any changes you need to make to the structure, layout or fittings of your home to ensure you can move around safely. These can range from simple handrails to complex structural changes. Capacity Building supports Capacity building funding is set aside for activities that will support you in learning new skills. These skills may include achieving some of your goals like living

independently, finding a job, or getting help with your NDIS plan management. There are nine sub-categories for Capacity Building funding: 1 | Support coordination – this is support funding that can be included in your NDIS plan to help you get the most from your budgets and supports. 2 | Improved living arrangements. 3 | Increased social and community participation. 4 | Finding and keeping a job. 5 | Improved relationships – the aim of Improved Relationships is to provide funds for specialised assessment and supports where an NDIS participant has complex or unclear behavioural needs. Behaviours of concern are different for each individual but are typically persistent behaviours that may limit a person’s ability to have a good life or risk physical safety. 6 | Improved health and wellbeing 7 | Improved learning – if one of the goals in your NDIS plan is to get a certain job and you need to take a course to help you get there, you may obtain funding in your Improved Learning budget. 8 | Improved life choices (includes plan management). 9 | Improved daily living – this is all about building skills for a better life. You may be able to utilise funding within this category to help build your skills, increase your independence, help you at home or receive treatment to improve your mobility. Leap in! can work through each budget with you and help you to get the most out of all three. Let us help you to navigate the NDIS. Call 1300 05 78 78 to have your questions answered or to sign up to Leap in! plan management today. I SSU E 28 | S P R I N G 2021 21

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EARLY CHILDHOOD DEVELOPMENT

Identifying

DEVELOPMENTAL ISSUE

Parents know their child better than anyone else. As a result, it’s important for parents to be empowered with knowledge and strategies to make sure they can identify concerns with their child’s development and get help as quickly as they need to.

s a parent, you understand better than anyone else what your child can and can’t do, and how your child’s abilities and behaviours might vary depending on factors such as time of day, the environment and the people around them. You have also seen changes in your child over time, so you know whether these potential developmental concerns have gotten better, worse or remained the same. All of this knowledge is very relevant and valuable, and you should not underestimate your insight. If you are not sure whether what you are seeing in your child should be cause for concern, the following outlines some signs that your child might have a developmental concern that you should seek a review or help for. Please note that this list is not exhaustive – if your concerns you have for your child are not listed, I would encourage you to still seek an assessment and help from a health professional or therapist.

SIGNS TO LOOK FOR IN...

EARLY INFANCY OR EARLY DEVELOPMENT • Your baby feels floppy or stiff to hold, or they hold their limbs very stiffly. • Your baby does not use their eyes or vision as expected (not looking at things 2 4 SO U RCEKI DS .CO M . AU

in their environment), or they are not interacting with you as you would expect them to (making eye contact, cooing or babbling, interacting or exploring toys and other things in their environment). • You have concerns about how your baby is learning to move, or they are delayed in movement skills; for example, they are not rolling or sitting or standing around the age when they would be expected to. • Your baby uses one side of their body more than the other side (for example, reaching with one arm but not the other; kicking one leg much more than the other). • Your baby was born prematurely, and has experienced medical events that put them at risk of a developmental concern. • Your baby has been diagnosed with a condition that is likely to affect their development such as Down syndrome or cerebral palsy for example.

SIGNS TO LOOK FOR IN...

LATER CHILDHOOD • You have concerns about your child’s motor skills, such as the way they walk, run, jump, hop, catch a ball and/or climb. They might have poor posture, frequent trips or falls, poor balance, and/ or co-ordination. They might appear to move differently from other children and may have trouble keeping up with peers

in games, or they might not be able to do certain activities at all. • Your child might be taking longer or struggling to learn self-care skills such as toileting, eating and drinking and mealtime behaviours, and washing and dressing. • Your child might be struggling to keep up with their school work, or is falling behind their classmates. Their handwriting might be messy, or they might have trouble following the teacher’s instructions or maintaining focus on class activities. • Your child does not interact with other people or things in their environment as you would expect them to. For

If you have a lingering concern that isn’t being taken seriously, please trust your gut and seek out further opinions.

ACHIEVING MILESTONES – WHAT IS IMPORTANT?

example, your child does not make eye contact, they do not respond to their name. •Y our child is not talking or communicating (including non-verbal interactions) like other children their age. •Y our child has difficulty maintaining attention, gets distracted easily, or has trouble concentrating at home or at school. •Y our child has difficulty managing their emotions or behaviours and may become unexpectedly overwhelmed in certain situations. •Y our child has been diagnosed with a developmental condition that can be identified later in childhood such as

autism spectrum disorder, intellectual impairments or rare genetic conditions, or has acquired a developmental condition due to trauma. As already mentioned, this list is not exhaustive, and the descriptors are pretty general, so if you have a concern relating to your child that is not on this list, please seek help for it as early as you can. Even if it turns out you have nothing to worry about, seeking help from a health professional as early as possible will either: • P rovide an early baseline assessment that, when combined with later assessments, might help to figure out if something is going on for your child and/or provide peace of mind.

A lot of importance is often placed on a child’s age in relation to achieving certain milestones i.e. walking at around 12 months for example. It’s important to understand that this is just a “ballpark” age and what’s considered ‘normal limits’ for a child to reach this developmental milestone is actually a wide range. What is more important to understanding whether your child is developing as expected is how they develop – whether they are using typical movement patterns, understanding and starting to use language as expected, exploring and playing, as well as how they are progressing over time. When self-assessing your child’s development, consider the following questions: • I s your child achieving developmental milestones within the age brackets that they are expected? • How is your child achieving those milestones? Are they moving or learning as you would expect or are they doing I SSU E 28 | S P R I N G 2021 2 5

EARLY CHILDHOOD DEVELOPMENT

something unusual? • I s your child progressing in development over time or are they falling further and further behind? This timeline of progress and the information about how your child is developing provides a health professional with so much more information about your child’s development than whether or not they are achieving a milestone at a specific age.

may be able to identify if a child has to assist your child to improve or maximise a developmental difficulty or specific those abilities. condition prior to the child seeing a At this point, I want to highly paediatrician or GP. recommend that you find experts you can Therapists such as physios, occupational trust, rather than listening to friends or therapists, and speech and language ‘Dr Google’. Searching for information pathologists, especially those of us who online you are going to find both the worst work in the area of child development, and best-case scenarios – neither of which have an excellent understanding of the are going to help you or your child. areas affecting your child within the field TRUSTING Searching for in which we work. YOUR GUT HOW TO SEEK HELP EARLY But, even more I wish I could say information online Depending on what your concerns are importantly, therapists you are going to find it never happens, for your child, you may choose to book in have extensive training but I do know that both the worst and sometimes parents’ with a doctor or a therapist, or even both. in the management best-case scenarios concerns can be Booking in with a GP or paediatrician is and treatment of useful to get an overall assessment of your developmental initially dismissed, – neither of which child’s development. Going down this route conditions. or parents are not are going to help you listened to by the is also necessary if you think your child By seeing a therapist or your child. might need to have specific investigations as early as possible, experts they are done such as blood tests or x-rays or that even before or at the seeking help from. they may need a specialist referral. same time as seeing a GP or paediatrician, Let me repeat – you know your child Sometimes a paediatrician or GP will you can receive a specific assessment of better than anyone else. So, if you have a refer a child to a see a therapist to ask your child’s abilities, which will help the lingering concern that isn’t being taken for the therapist’s opinion on the child’s GP or paediatrician achieve a complete seriously, please trust your gut and seek out development or presentation so they have and thorough picture of your child’s further opinions. When you do this, use all more specific information before giving presentation. Not only that, but you will the strategies above but also explain to the a diagnosis. Alternatively, a therapist also be able to start on specific treatment second health professional why are seeking a second opinion. What about that first opinion didn’t sit well with you? This may help the second professional understand areas that might not have been looked into, to prepare you or additional investigations that could be for seeking help are as follows: done or strategies to try. Whenever you are seeking out the opinions of health professionals, it is so them along to your first professional to the Create a diary of your important that you can find people you appointment. action you are ultimately child’s current and past can trust. Having a professional or team Write down your wanting for your child. developmental progress. concerns that you Write down questions of professionals you trust, who you know Go back through photos want to talk about, the you want to ask so and videos, review are being upfront and honest with you, impact on your child’s that you don’t forget baby books or personal and are doing everything they can to help life, your concerns anything. diaries. This will help you, will help you to recognise the benefits for the future and the Consider bringing you put together a clear of getting early intervention and help for outcome you want someone trusted with history. your child, perhaps even before the signs from the appointment. you – they can reiterate If your child’s of their condition or disability are fully Understanding and what you’re saying concerns or behaviours obvious to you. being able to articulate and listen to help you

My top tips

only occur sometimes or in certain situations, try

this level of information

remember what was said

to catch them on video

can sometimes help

during the appointment.

or in photos and take

direct the health

By Emily Hayles

This article has been adapted from a chapter from the book of ‘Braver than you think: How to help your child with a disability live their best life’ by Emily Hayles. Emily is the principal physiotherapist and owner of Move and Play Paediatric Therapy, a multidisciplinary children’s therapy service based in Mackay, Queensland. Ph: (07) 4942 9343 | Email: admin@moveplaypaedtherapy.com.au | moveplaypaedtherapy.com.au | facebook.com/moveplaypaedtherapy | @moveplaypaedtherapy

2 6 SO U RCEKI DS .CO M . AU

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FUN ACTIVITES

YOU CAN DO AT HOME TO HELP DEVELOPMENTAL MILESTONES Many activities that kids naturally enjoy are inherently building and developing their skills. Many of these activities are more complicated and involve more skills than we give them credit for.

2) Construction Play

Take for example playing with Duplo type

blocks or plastic cups; building towers,

bricks. This activity is actually quite complex

buildings and cars out of old cardboard

and offers many opportunities for developing

boxes; Lego or Duplo; Jenga; building a

skills such as grasp, in hand manipulation, identification of objects by colour, size and shape. It builds muscle strength, teaches perseverance and patience and social skills like sharing if done with siblings or even

Skills in focus – fine motor skills, planning skills, patience, perseverance, problem solving and hand eye coordination. Activity ideas – building and stacking with

blanket cubby house, or putting together

5) Structured play

a train set.

Games with rules and instructions to follow.

3) Art and craft

Skills in focus – social skills (turn taking, sharing), fine motor skills, rule following,

parents! This fun and simple activity is

Skills in focus – fine motor skills, planning

patience and problem solving.

building many skills and providing “building

skills, hand eye coordination, muscle

Activity ideas – card games or board

blocks” (pun intended!) for the future skills

strength in fingers, hands, arms and

games – like matching or snap; Simon says;

required for other tasks such as handwriting,

shoulders; attention and concentration.

musical chairs or cushions; puzzles; sorting

and dressing. The therapists at Allowah

Activity ideas – drawing and painting on

and matching games.

Children’s Hospital and Disability Support

different surfaces (such as table, floor, wall

Services have compiled a list of activities you

or easel) will strengthen different muscles;

can do with your child at home, to assist their development.

OCCUPATIONAL THERAPY

IDEAS FOR SKILL DEVELOPMENT

1) Messy Play Skills in focus – fine motor skills (including

using scissors to cut through different materials (e.g. paper, cardboard, playdough); painting with different objects (e.g. cotton

PHYSIOTHERAPY

IDEAS FOR SKILL DEVELOPMENT

balls, cotton buds, fork, bubble wrap); making

1) Tummy time

creatures, people or places out of recycled

Method: Parents recline on their back

materials such as egg cartons, cardboard

with baby’s tummy on their stomach, baby’s

boxes, milk bottles or magazines.

head facing parents. When the parent talk to their baby, they will try to push their arms

grasp, manipulation, and muscle strength),

4) Imaginative play

hand eye coordination, spatial awareness,

Skills in focus – fine motor skills, dressing

parent face.

body awareness and much more.

skills, creativity, problem solving, and social

Benefit: Tummy time gives babies an

Activity ideas – playdough (making your

skills (turn taking and sharing).

opportunity to try an alternative position

own with your child provides even more

Activity ideas – playing farms, doctors,

and helps to prevent them from getting

opportunities for skill development); rice

vets, schools, shops, or zoos; pretending

a flat head syndrome from lying on their

play (fill a tray or container with rice and

to go on camping trips, safaris, underwater

back for a long period of time. Also, it

hide objects in it for your child to find, get

explorations, or outer space adventures. Your

helps to strengthen baby’s head, neck,

out cups and spoons and bowls so they can

child can use the resources you have at home

arms and upper body. Furthermore, it helps

tip and pour); playing with slime and shaving

to create costumes, buildings, maps, food,

to develop their gross motor skills to assist

cream (hide things in it, draw pictures,

storylines and more to fit the theme they

other motor movements like creeping,

letters, or numbers in it).

have chosen.

crawling.

3 0 SO U RCEKI DS .CO M . AU

and lift their chest and head up and look at

EARLY CHILDHOOD DEVELOPMENT

SPEECH THERAPY

IDEAS FOR SKILL DEVELOPMENT

1) Cause and effect activities Using light up toys and push buttons to activate an action. This can be used to target functional language such as requesting for ‘more’, ‘yes’, ‘no’ and ‘finished’.

2) Sensory toys These can be made at home, for example sensory rice by dyeing rice in a variety of colours, playdoh or creating a sensory board with pompoms and other craft items of various colours and textures. This can be used to introduce basic concepts such as colours, shapes, textures and sizes to children.

3) Reading books

2) Roll over exercise

in their trunk and neck muscles, parent can

Introducing touch and feel books and basic

Method: Parent can place a toy on one side

prop them up to a sitting position on the floor

picture books. Point out pictures, colours,

to encourage babies to roll toward it. Babies

and put toys in front of them.

shapes, actions instead of reading words to

may feel difficult at the first few attempts,

Benefit: Sitting is a great exercise to practice

encourage language development. Ask ‘wh-‘

parent can provide assistance on their hips

balance, improve postural control, as well as

questions, such as who, what and where, to

and shoulders to assist the roll. Once babies

strengthen neck and trunk muscles. Also, it

build their understanding of these concepts.

develop their neck, back and core strength,

is very important for the next gross motor

they will start rolling from supine-to-prone

milestones, which are sit-to-stand, standing

4) Pretend play

and prone-to-supine independently.

and walking.

Using puppets, dolls, stuffed animals, imitate

Benefit: This exercise is good at

functional actions such as eating, brushing

strengthening babies’ neck, upper, and lower

5) Stand up practice

back muscles. Also, it helps improve body

Method: Parent can place a toy on the couch

build an understanding of these concepts

posture.

to encourage babies to pull the couch to

and encourage functional play.

3) Sit-ups

stand and reach the toy. At first, parent may

hair, playing, jumping and other actions to

need to provide assistance on their hips

5) Nursery rhymes

Method: Parent holds babys’ arms and pulls

to perform the movement. When babies

Sing nursery rhymes with accompanying

them slowly from a lying position into a

gain more confidence and have more legs

actions such as, ‘open, shut them’ and

sitting position. Parent can start with a small

strength, parent can reduce support and let

‘round the garden’. This reinforces language

degree of movement, such as pulling from

them do it independently.

through their repetitive nature and pairing

lying to a 45 degrees recline position.

Benefit: Stand-up practice is an excellent

words with actions. It targets a variety of

Benefit: Babies will naturally flex their core

exercise to increase muscle strength in

language concepts such as verbs and names,

muscle and further flex their neck to keep

babies’ legs. Also, it encourages babies to

whilst encouraging eye contact and social

their head in alignment with their body in

weight bear on their legs.

engagement.

the sit-ups exercise. Therefore, it is a good exercise to strengthen babies’ shoulders, core, arms, and back.

4) Sitting Method: Parent can place the baby on their lap to maintain a seated position. When babies developed more strength and control

About Allowah - Presbyterian Children’s Hospital and Disability Support Services: For over 60 years, Allowah has been supporting children with complex disabilities and medical needs. Based in Dundas Valley, NSW (close to Carlingford, Epping and Rydalmere), our family-centred approach maximises quality of life for children and their carers. Allowah Disability Support Services is a fully accredited disability support provider and NDIS provider. We provide a huge range of supports, including short stay accommodation (respite) for children with high level needs, after school care, holiday programs, mid-week adventures, therapy and early intervention. Ph: (02) 8877 3400 | allowah.org.au | 8 Perry Street, Dundas Valley, NSW 2117

I SSU E 28 | S P R I N G 2021 31

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Sleep problems and sleep disorders IN SCHOOL AGE CHILDREN

Sleep is vital for children’s and adolescents’ wellbeing. Evidence shows that children and adolescents who do not get enough sleep have more trouble learning. They are less attentive and motivated, have poor problem solving, more confusion, increased irritability, reduced memory, impaired communication, slower processing of information, poorer judgement, diminished reaction times and more indifference. Lack of sleep can also lead to behaviour and mood issues, leading to mental health difficulties such as anxiety and depressed mood. 3 4 SO U RCEKI DS .CO M . AU

SLEEP

ore than a third of school aged children may have sleep problems and many of these issues can be treated, most can be cured, and where they can’t be cured they can be managed. The following are just a few of the more common sleep problems and sleep disorders that are known to affect children and some of the things you may be noticing happening:

You notice that your child snores at night, has very restless sleep and wakes in the morning but does not look refreshed.

Your child may have Obstructive Sleep Apnoea Syndrome. Obstructive Sleep Apnoea Syndrome (OSAS) is a breathing problem during sleep. There are many things that may give clues that your child has OSAS e.g. loud snoring, noisy breathing, having to make more of an effort to breathe, or not breathing consistently with pauses and gasps every now and then. OSAS in children tends to be caused by large tonsils and/or adenoids and some children have a higher risk of OSAS such as if he or she is obese, has narrow bone structure in their face, Down syndrome, neurological problems, weak muscles or has had cleft palate.

Your child finds it hard to settle into sleep. They complain that their legs don’t feel comfortable. Or they have to move or get out of bed to walk around.

Your child may have Restless Legs Syndrome (RLS). This is a movement disorder that causes strange feelings in the legs that make the child want to move the legs or walk around. These come when the legs are

at rest, or when your child is lying down ready for sleep. When they move their legs, they will feel better for a short time. But the feelings will come back after a short time. This tends to occur in the time before sleep making it hard to get to sleep and stay asleep.

Your child wakes up all of a sudden at night. They look anxious or in distress. You may have seen them moving their arms and legs over and over. Or they may sleep in a strange position they might go stiff or call out.

This may be due to a parasomnia. Parasomnias are a group of night-time sleep problems. They are most common from 2 to 8 years of age. Common types are sleep terrors, confusional arousals, sleep walking, sleep talking and nightmares. Risk factors include if the child doesn’t get enough sleep or feels stressed. It can also run in families: a child has a higher risk if a parent had a parasomnia as a child. Parasomnias are usually thought of as normal in children. They do not normally need treatment, except if they are frequent or there is a risk that the child might hurt themselves OR Your child may be having nocturnal seizures. These can occur as the child goes to sleep, during sleep or just after waking in the morning. They can happen even if the child has never had a seizure during the day. They are much rarer than night terrors. The child may move in the same way over and over. They may jerk and shake and they may or may not wake up. If you suspect nocturnal seizures discuss this with your GP. They may refer your child to a paediatric sleep specialist or neurologist.

I SSU E 28 | S P R I N G 2021 35

During the day your child is very sleepy. Also, their muscles will go weak all of a sudden. When this happens, they fall to the ground. This seems to be set off by laughter or upsets. This can happen several times in a week.

Your child may be suffering from Narcolepsy. This is a neurological sleep problem. The brain can’t control the desire to sleep while it’s awake. If your child has it, they may feel very sleepy during the day. It may be linked with other symptoms such as cataplexy (sudden loss of muscle strength). In some people, it causes sudden sleep attacks during the day too. To work out if your child has it or not, they will need to visit a Children’s Sleep Unit. Here they will do an overnight sleep study and daytime nap studies. A paediatric sleep specialist needs to do this. If they do turn out to have it, a management plan will be developed. Plans to manage behaviour and maybe some medication will be a part of this.

What is an overnight sleep study?

Your child finds it hard to get to sleep and/or finds it hard to go back to sleep after they wake up at night. Or they wake very early in the morning.

Your child may have insomia. This is a sleep problem where it is hard to go to sleep and stay asleep. The cause is often behavioural sleep problems, anxiety, depression or stress. Or it could be that they cannot switch off the brain from thinking and let go of the day. This can cause daytime problems with behaviour and learning. Good sleep habits before and at the time they go to bed can make things better. But if not then you should see your family doctor who may arrange a referral to a paediatric sleep specialist. They will look for more ways to improve your child’s sleep.

A sleep specialist may want to conduct a sleep study to get a better idea of what is happening during your child’s sleep. During a study a range of non-invasive equipment is used to provide a picture of what is going on; how often your child wakes, if they are dreaming, how they are breathing etc. Leads & sensors will be attached to your child with a special glue that easily washes away after the study. The other end of the sensors/leads will be attached to equipment that is monitored overnight.

The leads and sensors include (but are not limited to): • T hose on the head and behind the ears to measure brainwaves. • S ensors next to the eyes to measure eye movement. • A band is worn around the chest and abdomen to measure breathing rate.

Your child can have a sleep problem or a sleep disorder for some time before it is noticed. If you do suspect they have one, keep a diary of what you see and when you see it. You should see your family doctor to discuss your concerns. A referral to a paediatric sleep specialist may be needed. There are sleep units that specialise in children’s sleep so if you are having ongoing issues, a sleep specialist will help to work out what is wrong and how to treat it.

• Leads will measure heartrate (ECG). • O xygen levels will be measured through a finger monitor. • L eads on the legs will measure movement and sleep positions.

Your child will most likely be nervous but it’s important for them to know that: • Nothing will hurt. • Mum or dad or another grown up will be close by all night. • A nurse will be on hand to help if you wake up or need to use the toilet. • You can bring things from home like your pillow, a teddy, a favourite book. • You can even wear your own pyjamas!

The above information has been reproduced with permission from the Sleep Health Foundation – Australia’s leading advocate for healthy sleep. To access more of their fact sheets and advice visit sleephealthfoundation.org.au

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Strategies FOR A MORE SETTLED NIGHT’S SLEEP

A huge percentage of my practice deals with sleep disturbances! Even if this is not the primary problem, discussions often turn to how the problem the child or family are seeing me about impacts their sleep. Research shows how we are all less effective when we are tired. According to the Sleep Foundation’s published guidelines for how much sleep we actually need in order to be productive; adults need between 7 and 9 hours of sleep a night. Children and babies need anywhere between 9.25 and 18 hours depending on their age. However, many of us live with multiple 4 0 SO U RCEKI DS .CO M . AU

demands on our time, and for children who do not settle easily, these figures can be a pipe dream. Children not sleeping properly for any reason at any stage of the night can wreak havoc with the ongoing sleep patterns of the whole household and in turn, the concentration of everybody affected. When a child has special needs, sleeping properly can be a lifelong challenge which may be more evident in those children with behaviour difficulties as recognised by many recent research studies. Whilst the reasons for poor sleep may be varied, often the solutions to improve, although not cure, the problem can be relatively simple and can be effective for children irrespective of their age or ability.

Finding The Problem For most people, the exact area where the problem with sleep lies is not always easy to identify. It is generally not as straight forward as difficulty falling asleep or not staying asleep. The solution for each issue is different. To identify the problem, it can be helpful to keep a ‘sleep diary’ for approximately a week. This diary should start from the time your child gets home from school or from approximately 4pm, in order that you can try to pinpoint any triggers that help or hinder sleep including particular foods, activities or environments. Document the time your child goes to bed, the time they actually fall asleep and then any time that they are awake during the night. A diary like

SLEEP

Food and Sleep this can also help you to understand your child’s general behaviour better including when they are unwell. By identifying patterns it can then be easier to tackle each problem one by one and improve the overall situation.

Much research shows the connection between eating too close to bedtime and not sleeping well through the night. However, for children whose days are jam packed, it is often not possible to have as long a gap as preferable between dinner and sleep time! It is therefore important to think about what they are eating at that time and to try to identify any foods that are having an adverse effect on your child’s sleep

pattern. Some foods that have been highlighted as Time To Process helping with sleep and relaxation are: The pace of life is so fast and sometimes we do not have the chance during the • Dairy • Fish • Wholegrains including day to take stock of all the stimuli we are cereals and oatmeal • Bananas • Rice surrounded by and the achievements we have made. This can often be the case All of these foods help our bodies to for children with special needs whose produce the hormones that are needed for processing can be slower but is just as sleep including melatonin so can help us to be important. It is crucial to allow time naturally prepared and sleepy prior to bedtime. for this as part of their daily routine. It can otherwise lead to children doing it themselves at night when they are meant to be falling asleep or to waking up in the this routine to happen at the same time cot/bed/mattress that you are expecting night as they are unable to sleep soundly each day and to be a calming time for you them to sleep on. When they sleep as their mind is so full and is working and your family. Whether it includes bathelsewhere in a different place, sleep is likely overtime! One strategy for this can be time, story time or some chill out time to be disturbed. Make sure they like their to spend some time at dinner or during with a DVD as a treat, your child should bed and are comfortable in it. Ensure that bath-time discussing what everyone in know that at the end of this routine, it is they feel safe there and settle them with the family did during their day. By asking sleep time and they are not allowed out their favourite comforter/water bottle/ your children questions about their of their beds. By developing this routine teddy bear. None of us would consider activities, it allows them to make sense of consistently each night and working on sleeping in our offices by choice. There them and to think them it with your child you are too many stimuli and too much noise through. For children who are not surprising them surrounding us. Therefore, think about "When a child are non-verbal, this can by suddenly saying it the sensory stimuli and distractions that has special be adapted to be done is bedtime, rather they surround your child at bedtime and keep needs, sleeping have had a quiet and with visual cues or as a them to a minimum. When you take your craft activity. In turn, this relaxing routine and are child to their room at bedtime, it should properly can reflection can help them ready for the next logical feel different to during the day. It should be a lifelong to fully comprehend it step. Sammy Margo, sleep be darker, allowing them to comprehend challenge" better, especially if they expert, describes people as the difference, and any stories should be have been engaged in new “dimmer switches” when read in a quieter voice to prepare them activities or met new people during the it comes to bedtime. We need to be turned for the quiet that is expected of them at proceeding day. out slowly not just switched from awake night-time. and alert to fast asleep. Human beings are Although these tips are just an initial Importance Of Routines unable to just produce tiredness, we need guide to what is often a very complex and For many of us, a routine is a helpful to induce it as well. distressing problem, little changes can and guide to our lives allowing us to manage do make big impacts. our expectations of the day ahead and A Bedtime Environment Wishing you all peaceful night's sleep! the things and people around us. For Before people go on a long journey, a children, including those with special common concern is how they will sleep By Ariella Lew needs, it is vital for them to understand on the aeroplane or in the car and how structure, routine and what is expected of they will be comfortable. This is the Ariella Lew is the founder of Kids on Track them. Bedtime is no exception. Children number one priority before a child will consultancy – an international paediatric nurse need to know what is going to happen, sleep well. Not only do they need to feel service that provides education and crisis when it will take place and what is emotionally settled in their environment management solutions for parents, schools and communities. kidsontrackconsultancy.com.au required from them as part of it. Allow but also physically comfortable with the

I SSU E 28 | S P R I N G 2021 41

BallBlanket by Avant Innovations Clinically proven to helps kids get to sleep and stay asleep.

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SLEEP

What is helping us a lot at the moment (it’s not a silver bullet but it’s been really good for us getting into the bedtime groove) is turning all the lights off except the warm pendant lights after shower time.

A routine that included listening to same music (Coldplay) every night since age 2, he’s now 9. He also listens to same music if we are having treatments and procedures that need him to calm.

Melatonin saved us. After a couple of years our child is now in the habit of going to bed and mostly can follow an evening routine without it most nights.

Don’t raise voices, get angry or increase adrenaline or be stressful before bedtime as that just makes it all 100 times harder for your child and for you.

We use smart globes and I have them dimmed to the lowest setting; both my children sleep with their light on all night. My daughter uses bipap so connecting that while she is asleep is easy with the light on.

Your Sleep Tips We asked our community the ones in the trenches just like you! - to give us their tips on what has helped them help their children fall asleep or stay asleep.*

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My 2 year old has a warm wheat pack by her toes and a galaxy light projector that switches off after 1 hour.

My 9yr old has had a white noise machine since birth. We also read a story in bed.

Melatonin and clonidine. No shame in our medication game - this has been life changing for our family and our relationships with each other!

It goes against all typical parenting advice, but I let my son have his iPad. Listening to music etc on it helps him fall back asleep when he wakes. It works for me too!

LeapStory has helped relax our son with a few stories, mindfulness meditations, songs and lullabies before sleep. It also has a night light and projector. Suitable for 3-10yr olds.

*If your child is having continued trouble sleeping or staying asleep it’s important that you also seek the advice of an expert or your child’s primary healthcare provider.

CALM AND SECURE FOR OUR KIDS The Nino bed allows children to see the world around them while providing safety and security. The transparent Perspex merges with the room allowing an unrestricted view, whilst protecting against falls and injuries. With a variety of colours available, also with the option of higher door elements or doors on both sides, we think this beautiful addition will bring comfort to everyone in the family. RRP POA. caremed.healthcare/product/ nino-series-childrens-bed

A BED FOR ANY LITTLE ADVENTURER! We do a love a teepee at Source Kids! We can’t go past this fun TeePee bed that is a great little hideaway for your little adventurer at the end of a busy day. RRP $649.00 amartfurniture.com.au

Sweet Slumber oi uc rK s p

If you’ve been wondering what is new out there to help our kids get ready for sleep, fall asleep and stay asleep – then check these products out! From chaos to calm, we’ve found some great buys to help with slumber.

CALM AND CLARITY AT B E D T I M E The Meditate Mate Monkey is a soft plush toy designed to assist children with relaxation at bedtime. It has a single 7-minute

S W E E T D R E A M S F O R E V E RY O N E The Safety Sleeper is a safe, fully enclosed bed system for children and adults with special needs for daily and travel use – giving peace of mind that your loved one is safe and secure. It prevents unattended wandering, promotes healthy sleep habits and reduces visual stimulation. It’s also designed to hold up against high activity levels and behaviours such as head banging and seizures. It is available in Australian single and double bed sizes. RRP POA avantinnovations.com.au

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guided meditation followed by soft music that children can listen to and drift off to sleep. The single meditation signals to your child to relax and can help with a calmer bedtime routine. RRP $79.95 meditatemate.com.au

SHOPPING

SLEEP TIGHT Many children with different sensory needs benefit from the security of a compression sheet. These JettProof sensory sheets provide calming sensory compression to help the over-stimulated nervous system calm down and be ready for a good night's sleep. RRP from $89.95 jettproof.com.au

SENDING YOU TO S L E E P E V E RY N I G H T ! The Neptune Sleep Lamp is a great bedroom sleep accessory. With 7 colour shades and soothing sounds, it will enhance your ability to calm down and fall sleep. It’s also dimmable with a timer, smart phone free, and smart enough to turn itself off once you’ve gone to sleep! RRP $139 neptuneblanket.com.au

S TAT I C S O U N D S T O S O OT H E ! White noise can be described as a sound similar to radio or TV static. How does it work? Because it covers all frequencies, white noise can be used to mask background noises and help people fall asleep more easily and more deeply. It may also help you to stay in a deeper sleep longer as it can mask loud, jarring noises which may otherwise wake us up. RRP $119.95

TRANSFORM YOUR B E D RO O M F RO M PLAYTIME TO BEDTIME The new Vuly Den turns a very ordinary bedroom into your very own indoor camping adventure! Complete with a quality foam mattress, a play fort with an extendable cover included – you will go from ultimate bed fortress to camping adventure by night! RRP $1299 vulyplay.com

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I SSU E 28 | S P R I N G 2021 47

Supporting Source Kids • We have a comprehensive range of paediatric products for hire and purchase • We specialise in complex rehabilitation for both short term and long term care • Our expert staff are available to assist with in-store trials With over 50 locations nationwide. Simply call 1300 133 120 to be connected with local specialist support.

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Helping Families to Beat Financial Hardship With many Australian families doing it extra tough because of the pandemic, a new financial counselling service launched by Variety – the Children’s Charity is here to help. The Variety Financial Counselling Service is aimed at families in need with children of kids who are sick, disadvantaged or living with disability. Raising a child with a disability or illness can be expensive and creates pressures on families who face a unique set of financial circumstances – like high medical costs, specialised educational needs and home modifications – all on a reduced income due to their caring responsibilities. In response to these complex issues, the free service can help families anywhere in Australia who are dealing with monetary stress and hardship. “We know financial counselling is an identified need amongst families facing challenges, such as the cost of having a child or multiple children with chronic illness or disability, single parent households, inability to work due to being a carer, ineligibility for NDIS funding, loss of income or reliance on government assistance,” explained Variety Queensland CEO, Steve Wakerley. Variety’s trained Financial Counsellors are equipped to offer help on everything from planning household budgets and managing debt, to negotiating with creditors, accessing utility grants, and providing Centrelink guidance. “This new program presents an opportunity to create a real impact for

Helping kids reach their full potential At Variety, we are committed to ensuring all kids are given the opportunity to reach their full potential, no matter what their potential may be. STEVE WAKERLEY CEO VARIETY QUEENSLAND.

Empowering families Financial counselling is an important service to empower families to secure a sound financial foundation and can improve outcomes on a range of measures, including financial capability and consequently health and wellbeing JON O’MALLY, EXECUTIVE OFFICER OF FINANCIAL COUNSELLORS ASSOCIATION OF QUEENSLAND.

families facing the high costs of raising a child with a disability,’ said Jon O’Mally, the Executive Officer of Financial Counsellors Association of Queensland. The free service, made possible by the support of the AMP Foundation, has been developed to assist with the future needs of a child with a disability or illness and their whole family. It is available around Australia via an internet/phone-based service. The new financial counselling program is the latest in a series of initiatives created by Variety to support Aussie kids who are sick, disadvantaged or living with a disability, when they need it most. Other support services include equipment grants, scholarships and creating rewarding experiences through sports days, sports camps, and choirs, as well as providing educational experiences.

Free Financial Counselling and Advocacy Variety’s Financial Counsellors are qualified, independent professionals who offer a non-judgemental and confidential service for Australian families facing financial stress or hardship. They can help families to understand their financial rights and obligations, refer them on to specialist agencies for legal advice and dispute resolution and advocate on behalf of families where required.

Families in need with children up to the age of 17 years old who wish to access the service call 1300 012 164. Or go to variety.org.au/ financialcounselling

I SSU E 28 | S P R I N G 2021 4 9

Career Pathways

Navigating your way from dreaming about your desired job to realising that goal can be a struggle for anyone.

or many people with a disability, matching your skill sets with society’s employment expectations can make the journey even more challenging. Sometimes you have to lay the path in front of you because it’s never been done before. That’s the case with two businesses who are helping clients with a disability create their own positive futures, proving that with a little bit of assistance, you can set yourself up for an exciting career. Marlene Hoff owns and operates Victorian catering and cooking school business 100 Mile Foodie, which focusses on local food and wine sourced from

10o0odmieile f

within 100miles (160kms) – an initiative started with the environment and reducing carbon emissions in mind. Five years after starting operations, Marlene was approached by Lara Watkins, a mother with a hearing-impaired child living with autism and an identity disorder. The meeting between Marlene and Amelia Watkins would be the beginning of a business niche for both parties. “Amelia’s mum contacted me in 2018 and asked me to teach her daughter to cook and gain some independence in the kitchen,” recalls Marlene. “I am a chef, hospitality trainer and have taught cooking from prep-Year 12 students, plus adults in many settings

“Keep trying and don’t feel scared to dream big – challenge mainstream services and also the NDIS if your needs or goals are not being met,”

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including TAFE, but I hadn’t worked with clients living with a disability – Amelia was my first.” Marlene must have done something right! Amelia has quickly gone from kitchen novice to cookie queen – establishing Amelia’s Cookie Co. “One week we baked my favourite cafe treat – the Smartie cookie,” recalls Amelia. “Marlene suggested I try to sell them. Everyone loved them so I started to try different varieties. My yo-yos are super popular!” The 17-year-old takes one day off school each week to focus on her enterprise and is beyond proud of the sweet success she has been able to achieve. “My business entails having one day off school per week cooking with the assistance of support workers in a registered kitchen to meet the orders for members of the public, my mum’s workmates and basketball stadiums on the Mornington Peninsula,” Amelia explains. “My most consistent supporter, even with five COVID closures with Melbourne lockdowns, has been a cafe in Tyabb called The Hungry Peacock.” There were some initial challenges with an NDIS review to gain enough funding to support her career pathway. “Having a disability, I couldn’t get a regular after school job like my peers,” Amelia says. “My brother worked at Woollies whilst he was at school. I would need a support worker or my parents to attend work with me to be able to have a part-time afterschool job.

EMPLOYMENT

in Australia, so we have been picking

in Australia from the UK to enhance

up traction with the number of talent

the representation of people with a

on our books increasing weekly,” Alice

disability in the media.

says.

Zebedee Talent was co-founded by Zoe

“We want to continue this growth

Proctor, a plus-size model who also

curve in Australia and make ourselves

runs a performing arts academy for

available in the entire country.”

disabled people, and Laura Johnson, a

The business has been successful

former mental health social worker.

across the UK.

Zebedee Talent

Zebedee Talent have recently arrived

“Our co-founders and directors were walking along the beach together one evening when they decided they had had enough of the lack of representation in the media for those with disabilities,” explains Zebedee

“My mother canvassed NDIS to gain funding for support workers to assist with my goal of having an after-school job. “I can’t wait to finish school and start working more next year.” That experience guides her advice for anyone wishing to start their own business enterprise. “Keep trying and don’t feel scared to dream big – challenge mainstream services and also the NDIS if your needs or goals are not being met,” she says. While Amelia is thriving, Marlene has embraced the new business opportunity too. She now helps many clients with an NDIS plan – encouraging the development of independent living skills by teaching participants about nutritious food choices with a hands-on approach. “We work on improving skills surrounding food preparation, meal planning, meal prepping and meal storage, all while experiencing new flavours, new recipes, cooking and the enjoyment of food,” Marlene says. “Learning each client’s specific needs and choices can take time as each person is different and we want to make a huge difference in their lives immediately but we have learnt that everything takes time and patience and we hope our clients stay with us for many, many years, so we don’t need to rush. “To be a part of our clients lives helping them achieve independence is an amazing privilege. “I feel like this new career of mine chose me – as Confucius says ‘Choose a job you love, and you will never have to work a day in your life’.” 100milefoodie.com.au

Talent Press Manager and Booker, Alice Winsor. “They decided their skills would blend together well enough to give opening their own agency exclusively for those with disabilities a go. Since then, we have expanded our horizons to also include those with visible differences, transgender people and non-binary people. “At Zebedee we are curating change

“Ellie Goldstein, who is from Essex, has

in the industry by pushing disabled

been a real shining star at the agency.

and different models to the table.

Ellie digitally covered the UK-based

Our work has impacted the industry

Glamour Magazine earlier this year,

tremendously, and has resulted in

which was a major deal for us. Ellie has

a whole lot more opportunities in

been the face of many of our 'firsts'

the media for those with disabilities

including plenty of magazine covers,”

and differences. However, we do

Alice says.

not directly create opportunities.

“We have also had a really lovely

Casting directors, brands and media

relationship with Primark, who have

companies do this.

used many of our child models,

“Those with disabilities are capable

including Willow Welbourne and

of modelling and acting brilliantly,

Elijah Enwerem. Seeing their faces on

they just need the appropriate

huge posters in stores has been so

representation to get them to the

gratifying.

available opportunities. It is important

“Outside of the modelling world, we

to us that our talents are empowered

have had great success in the realm of

by their work, as they know they are

acting. We have a soon-to-be Disney

part of the change that is needed in

star, as well as a soon-to-be Netflix

the industry.”

star under our belts.

The agency launched an office in

“In the beginning, we had to find

Australia in March and is working

our feet and learn the ropes of the

hard to increase its talent base from

industry. Once we did this, we had

its current number of 43. It’s already

to work hard to become a name

fielding multiple audition requests for

which would always come to casting

brands such as Target, Woolworths,

directors' minds when in the process

Coles, Westfield and Disney, and has

of casting. Being an initial thought

some roles booked on an upcoming

rather than an afterthought is

Netflix series as well as a range of

something we are still working to

advertising campaigns.

achieve.”

Applications for interested people are

zebedeemanagement.co.uk

available online. “There are no other agencies like us

By Rachel Williams

I SSU E 28 | S P R I N G 2021 51

Disability and Employment

We chat to Natasha Ward, Marketing & Communications Manager for You First Disability services about her journey to employment and experiences at school.

Can you tell us about the job you hold at You First and the journey that led to this role? For the past few years, I have been working closely with the You First team to develop and deliver effective marketing and communication strategies within the disability sector. Having worked with kids with disabilities for several years, in 2018, I decided to spend a year abroad working as an au pair in LA, California. although this was probably one of the hardest and challenging experiences of my life, it taught me so much about myself and it was here that I really uncovered my passion for digital marketing. When I returning to Australia, I decided to develop and expand on my new skill set by enrolling to study at RMIT University. After finishing my studies, I went on to work with a great organisation as a social media coordinator, learning the ins & outs of digital communication. When the opportunity presented itself to jump onboard with the You First team, allowing me to combine my disability experience, together with my creative passions, it was a complete no brainer. What diagnoses do you have? Were you diagnosed during school or before? As a young girl, I was actually diagnosed with something called ‘left-eye-right-hand syndrome which, in recent years, has come to be known as Left-Right confusion. At the time, my mum was handed a photocopy of a research paper/article about the condition, the school put me into some special classes to work on my coordination and pretty much just sent us on our way. It wasn’t until I finished school that I then received my diagnoses of ADHD, sensory process disorder (commonly known as Sensory sensitivity) & autism spectrum disorder.

EMPLOYMENT

awareness. Every day I am learning new things, What I’m good at and, … what I’m not so good at, I am learning new ways to identify problematic areas & how to best communicate that with friends, family & even work colleges. Communication seems to be key, which is not exactly my strongest suit (I know… a little ironic given my job as a Marketing & Communications Manager!) How was the transition to from school to work for you? Do you have any tips or insights for our readers?

What was school like for you? Did you experience any particular challenges navigating your educational path? I think the most challenging part of my experiences would definitely have to be the fact that, like most females on the spectrum, I didn’t exactly fit the typical diagnoses traits of ADHD or autism spectrum disorder and therefore I didn’t receive my diagnoses until much later in life. It’s easy for me to reflect on my life experiences and to say with hindsight ‘how did I not see the signs’, but I guess part of the problem that we seem to still face today is that there just wasn’t enough awareness or information that was readily available in regards to how the diagnostic benchmarks really do differ between young males & females that don’t meet the diagnostic ‘norms’. Looking back, was there anything you needed that you felt you did not receive? I do feel that receiving an earlier

diagnosis & accessing more supports growing up may have changed a lot of the experiences I had when finishing school. I’ve always known that the way I see the world didn’t always align with what seemed to be the ‘norm’; kind of like a puzzle, with one piece missing. Navigating some of the emotions that come with that can create an extremely challenging environment for any young adult, particularly when I didn’t necessarily understand why I was finding hardship in situations that appeared to be so seamless & effortless to everyone else around me.

I can admit, I did find the transition quite hard at first, my academic journey had not been so typical but then again, as I was discovering, neither was I. I struggled for a while really trying to decide what I wanted to do after education. The concept that ‘the decisions we made now would impact the rest of our lives’ was always so daunting and It kind of felt like every decision I made was going to make or break me. What I probably didn’t realise at the time was that with every experience no matter how big or small, good, or bad, was setting me on a path that has led me to where I am today. Is there anything else you would like parents of children with a disability, or the kids themselves, to know?

What helped you the most? When I was first asked about doing this interview, I must admit, I was hesitant. Having only been diagnosed later in life, this is all still so new to me, for a long time I found it really challenging to talk about as I tried to learn and understand this space better and what it meant to me being ‘diagnosed’. After spending some time reflecting on a lot, I do think that what has really helped me the most so far in this journey, is probably around developing a good self-

For a cohort of people who truly do rely on the routine & predictability or everyday life, my one piece of advice may seem a little contradictive, but I promise you, it’s key. Be flexible. Be flexible with yourself and your expectations, allow yourself the room for failure, but always be sure to recognise your wins. Because as we all know, if repetition is key then we need to repeat & repeat our positive mantras. Celebrate the small steps and before you know it… you’ll have climbed to the top of the staircase. I SSU E 28 | S P R I N G 2021 53

Managing MEltDowns

When a child is in meltdown, it can be distressing for everyone involved. In this article, I will help you understand why children have meltdowns and how to prevent them and give you some effective ways of supporting children when a meltdown occurs.

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What is a meltdown?

A meltdown is an automatic and intense physical and emotional reaction to stress. When a child feels threatened, unsafe or overwhelmed, this automatic response in the brain and body (often called fight or flight) is triggered to keep us safe. While this response might be helpful if we are in physical danger, it is not usually a useful reaction to stress in everyday life. For children who are very sensitive to possible threats in their environment, meltdowns can happen regularly and have a negative impact on their lives. Meltdowns can be triggered by many things including sensory experiences, demands, confusion, anxiety, or feeling unsafe. As adults, we may not think that a situation is threatening, but it is the child’s perception that is important. If they feel threatened, their brain and body will respond automatically. A child in meltdown might scream and yell, hit, kick, throw things, cry or harm themselves. While anyone can experience a meltdown, they are most often experienced by children with developmental disabilities and neurodivergent conditions like developmental delay, intellectual disability, autism, ADHD and trauma. It is important to know that during a meltdown, the survival part of the brain takes charge and the thinking part of

the brain goes offline, making it hard for a child to think and listen. A child in meltdown is a child who is not in control of their words and actions – they are not deliberately trying to manipulate the adults around them.

How can we prevent a meltdown? Once a child is in meltdown we can’t stop it, we need to ride the wave and allow it to run its course. But if we act before the meltdown occurs, we can often stop it happening. Here are some tips for supporting children when they are heading towards a meltdown:

EMOTIONS

Know your child’s stress signals Children often show signs of stress in subtle ways that they may not even be aware of (e.g. twirling hair, stimming, talking loudly, pacing). When we know the signs that a child is becoming stressed, we can often act to support them to calm and prevent the meltdown occurring.

Stay calm Emotions are contagious and when we can see a child is escalating it can be distressing for us too, but a stressed adult cannot calm a stressed child. We need to meet their stress with our calm to bring

them down. This is called co-regulation. Recognising signs of our own stress and learning ways to calm in the moment can assist us to better support children in distress.

Give in to avoid conflict When a child is approaching a meltdown, sometimes the best thing to do is give the child what they want. This sounds like the opposite of what many of us consider good parenting, but it makes a lot of sense. As I mentioned earlier, when a child is distressed, their thinking brain goes offline. This means that giving them what they want will not reward the distressed

behaviour because their brain cannot take in the information effectively. So, if it is possible to give a child what they want in the moment to stop a meltdown, this is a good outcome. It is then up to us to plan for the next time the child is in that situation so that they can manage without becoming upset (e.g. supporting the child to develop new skills, preparing the child for what to expect to avoid disappointment).

Reduce demands Demands can often be seen as threatening to a child, especially if they are already in a stressed state, so reducing or removing I SSU E 28 | S P R I N G 2021 5 5

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EMOTIONS

demands can help avoid a meltdown. This might mean putting off a chore until later, taking a break from a task, or maybe giving it a miss altogether to support the child to regulate.

Use humour and distraction Have you ever noticed that it is hard to be angry or scared when you are laughing? Making a joke or getting in touch with your silly side can be a great way to diffuse a stressful situation and stop a child reaching meltdown. It can also be helpful to distract a child by talking to them about an interest or bringing something novel to their attention.

Offer sensory supports When a child is becoming stressed, their nervous system is usually dysregulated. Sensory input can be a powerful way to help a child to regulate. If your child has preferences for sensory materials that help them feel safe and calm (e.g. fidget toys, soft blankets, music, a tent and cushions), giving them access to those items when they are becoming distressed can be a great way to support them to prevent a meltdown.

"It is important not to punish a child for what they have done during a meltdown,"

Avoid eye contact Looking at someone directly in the eyes can be interpreted as threatening, especially if they are already in a stressed state, so keep your eyes down wherever possible.

Slow your movements Moving quickly can startle a child and cause them to become more stressed or dysregulated. Slowing your movements reduces the chances of escalating the child further.

Keep your distance Approaching a child in meltdown can be dangerous if the child is acting out, but can also be seen as threatening to the child. Try and keep a safe distance away so the child can see you are there with them, but without putting yourself in harm’s way. If you must move towards a child in meltdown, calmly and quietly tell them what you are doing.

Use few words and a quiet voice Remember that the child’s thinking brain is offline during a meltdown so their ability to listen and understand will be reduced. Keep talking to a minimum and use a calm and quiet voice to avoid overloading them.

Be cautious of touch

Sometimes, despite our best efforts, a child may still go into meltdown. While a meltdown can’t be stopped once it has started, there are things you can do to help you and your child to get through it safely:

Touch can be interpreted as a threat to a child in meltdown, and can be traumatising to children who have previously been restrained. It should be a last resort to touch a child in meltdown unless they seek you out for physical comfort, as making physical contact while a child is extremely distressed is more likely to result in injury to you or to your child.

Stay calm

Remove others

Co-regulation is key here. As we discussed earlier, being calm will support your child to calm.

Where possible remove others around your child to ensure their safety and to prevent increased stress due to being watched.

What can we do when a child is in meltdown?

How can we help after a meltdown? After a meltdown, a child is often completely exhausted and may not even remember what has occurred. Similar techniques to those we discussed when a child is escalating can be used to support them to continue to calm. It is important not to punish a child for what they have done during a meltdown, remembering that they were not in control of their actions. Instead, we need to try to understand why the meltdown occurred, and what we can do to help prevent a meltdown in the future. It is also important to seek support and debrief with someone you trust to make sure you are taking care of yourself. As children grow and develop, they sometimes do not have the ability to manage stressful and challenging situations effectively, which can result in meltdowns. As adults, we have the power to adapt the environment around our children to set them up for success. By Raelene Dundon Raelene Dundon is an Autistic Educational & Developmental Psychologist, author and presenter, and runs Okey Dokey Childhood Therapy in Melbourne, Victoria, with her husband, Andrew. Raelene’s husband and children are also Neurodivergent, and she draws on her personal and professional experience to provide support to children and families. okeydokey.com.au

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to accompany you to the toilet to watch the poo being emptied into the toilet and flushed away. Get them involved by explaining what is happening (even if you are not sure they understand) and encourage them to flush the toilet, hand over hand if necessary Tell them when you are going to the toilet. When you have finished tell them where you have been and what you have been doing!

Re-enforce the communication Use verbal prompts, pictures or hand signs to maximise your child’s understanding. Make sure that whatever you use, it is not too complicated. A long schedule strip detailing pants down, trousers down, sit on the toilet, do a poo, blah blah may be too much too soon. So, if you are just aiming for a 10-minute sit at first then the strip below may be all you need. Keep the language the same. If you decide to refer to doing a poo as a ‘number 2’ then make sure that everyone including family, carers, teachers etc use the same words. The same applies to pictures and hand signs.

Be consistent Keep the routine the same across all environments as much as possible by ensuring that the toilet step, the visual aids, the Wiggles toilet song playing on repeat etc are all the same and used in the same way each time.

Praise and reward Studies that showed success in the toileting of children and adults with special needs found that the participants were more

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Give your child some level of control • Hence why you should get your child to flush the toilet • Let them choose the colour of the sticker if you are using a reward chart • After you have praised them, you might give them the choice between two different snacks as a reward. Or maybe a choice of which story you will read to them. Rewards don’t need to be fancy but they do need to happen immediately after the action you are praising. I hope that reading this article will encourage you to give toilet training a go with your child. Intellectual and physical disability are not necessarily barriers to achieving a level of continence and there are positive gains to be made in ensuring your child’s dignity and encouraging their own self care. Be prepared and plan for a start date so that you can have NDIS funding for a Continence Advisor (which comes from Core funding) to assist you with meeting your child’s goals and prescribe an individual plan for your child that is practical and realistic. By Nicola Mitchell Nicola Mitchell is a Continence Nurse Consultant. For more information on how she can assist you and your child you can contact her at continenceadvisor@gmail.com or call 0411 200 783

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“There are four key areas we promote – that participants feel safe and secure, they feel understood, they experience success and they belong."

By Rachel Williams I SSU E 28 | S P R I N G 2021 63

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admin@snugglybags.com.au 0408 955 967

snugglybags.com.au

It’s fun not therapy with Funky Monkey Bars in the backyard. Highly recommended by therapists for active and sensory play that builds strength, coordination, resilience and confidence. Modular, height-adjustable, free-standing frames. Customise to suit your whole family; all ages and all abilities. FMB - Source Kids ¼ page horizontal ad.indd 1

70 SO U RCEKI DS .CO M . AU

www.funkymonkeybar.com

1300 912 198 17/11/2020 7:20:13 AM

WATCH & READ

One for the kids

T H E F U N DA M E N TA L S O F C A R I N G A writer (Paul Rudd) retires after a personal tragedy and becomes the

This poetic and uplifting picture follows a young girl born with cerebral palsy as she pursues her dream of becoming a dancer. Like many young girls, Eva longs to dance. But unlike many would-be dancers, Eva has cerebral palsy. She doesn’t know what dance looks like for someone who uses a wheelchair. Then Eva learns of a place that has created a class for dancers of all abilities. Her first movements in the studio are tentative, but with the encouragement of her instructor and fellow students, Eva becomes more confident she’s found a place where she belongs. At last her dream

ASPERGER’S ARE US In this coming-of-age documentary, four friends on the Autism spectrum whom have bonded through humor and performed as the comedy troupe “Asperger’s Are Us” will prepare for one final, ambitious show before going their separate ways. Available to stream on Netflix.

TWO TO WATCH

I WILL DANCE, By Nancy Bo Flood .

caregiver to a disabled teen who has muscular dystrophy. When the two embark on an impromptu road trip, their ability to cope is tested as they start to understand the importance of hope and friendship. Available to stream on Netflix.

of dancing has come true.

Buy and sell with ease! Your one stop marketplace to buy, sell and donate New and pre-loved disability equipment

Assistive technology, accessible vehicles Aged care equipment

And more!

Head over to

eBility.com.au

to post an ad today!

(02) 8324 5691 | sales@ebility.com.au I SSU E 28 | S P R I N G 2021 71

Special Needs Strollers

KEY T

Toddlers

Children

Youth

Adults

We take a look at the different options on the market right now.

A LV E M A P I X I R E H A B PUSHCHAIR

AGE: Up to 50kg HEIGHT: 45cm to 62cm KEY FEATRURES T C

• Weight bearing, height adjustable fold-back footrest. • Moulded seat unit. • A ngle adjustable backrest. Pixi is a light, nimble, supportive rehab pushchair that provides excellent seating comfort. It is stable and robust – perfect for families who spend a lot of time moving around. astrisPME.com.au

ZIPPIE VOYAGE WEIGHT: Up to 34kg KEY FEATRURES

C O N VA I D C RU I S E R T C

• Reversible Stroller Seat with Tilt

and Recline functionality to help

improve your child’s positioning and assist with feeding, digestion, respiratory function and visual orientation. • Intuitive folding - The ZIPPIE Voyage early intervention stroller also has easy-to-reach folding triggers

AGE: Up to adult WEIGHT: Up to 114kg HEIGHT:Up to 173cm KEY FEATRURES • 30 degree of fixed tilt; Selftensioning padded Cordura seating system. • 5 years growth capabilities, 4 Seat widths available. • S eat depth and growth adjustment and Transit option available. • T he Convaid Cruiser has a sleek

which fold the stroller in an instant

silver frame and stylish new

into a handy pack size so you can

upholstery, which comes in a

quickly be on your way. • Slide-N-Lock Seat Adapter -

variety of colours. The specially designed padded

Designed for portability, the ZIPPIE

upholstery provides added comfort

Voyage stroller can be quickly and

for the user, and a one-piece angle

effortlessly disassembled to fit in

adjustable push handle for easy

the smallest of cars.

manoeuvring of the wheelchair by

sunrisemedical.com.au

the caregiver. dejaymedical.com.au

72 SO U RCEKI DS .CO M . AU

PRODUCT REVIEW

C O N VA I D E Z R I D E R AGE: Up to adult WEIGHT: Up to 114kg HEIGHT:Up to 173cm KEY FEATRURES

T C Y A

• 10 degree of fixed tilt. • Self-tensioning seating system. • 5 years growth capabilities, 4 Seat widths available; Seat depth and growth adjustment.

T C

The EZ rider is a compact, lightweight, folding stroller. It has similar features to the Cruiser however, the EZ rider is more suitable for individuals who have some degree of upper body control due to the more upright seat and back angle. dejaymedical.com.au

B U G GY P O D AGE: 6mths to 2 years WEIGHT: Up to 20kg

LECKEY SQUIGGLES SE AT ING ON Z IPPIE IR I S

AGE: 1 to 5 years WEIGHT: Up to 22kg

HEIGHT: 75cm to 110cm

KEY FEATRURES

• Award-winning, compact clip-on

• D esigned specifically for

seat for toddlers. Designed,

the developmental needs of

engineered and tested in the UK.

younger children- the one-

• B ackrest, 5-point safety harness,

piece seat base and adjustable

footrest & ball bearing mounted

sacral support can be used

wheel included.

to accommodate flexion or

• 2-click folding action, Easy

encourage extension.

to manoeuvre and a Great

• Adjustable footplate can be tilted

alternative to double/triple

to the preferred angle, ensuring

buggies and wheeled boards

the feet are well supported and

Buggypod io is the award-winning

providing a secure base for

convertible Buggypod which

maximum upper body function.

adapts to your family’s needs.

• T ilt-in-space feature provides a

Perfect for toddlers. It can be an

simple way to achieve a change

additional seat for your pushchair

of position without disturbing

or a neat and complete single

overall posture.

buggy*. dejaymedical.com.au

Suitable for use as a home chair, school chair or with a Zippie base, Squiggles meets all the postural and comfort requirements of

T C

B U G PA E D I A T R I C SE AT ING SYSTEM

a seating system for young children with special needs, while maintaining a fun, colourful design. sunrisemedical.com.au

WEIGHT: 35kg to 45kg HEIGHT: 90cm to 140cm KEY FEATRURES • Easy Tilt-In-Space system • Easy Adjustments • Compact & Lightweight The BUG is adjustable, versatile, flexible and practical with four different bases to suit individual needs. astrisPME.com.au

I SSU E 28 | S P R I N G 2021 73

Your trusted source of information to help children, youth + young adults living with a disability. Source Kids is Australia’s leading magazine for parents, carers and professionals of children, youth and young adults up to 25 years of age living with a disability. The glossy, national magazine is printed quarterly with relevant, reliable and up-to-date information.

Livi ng w ith

hea rt d is ea se

Bathroom aids Toddlers

Children

Youth

Adults

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

KEY T

T C Y A

T C Y

BEST SUITED FOR: 18 months to 16 years. 10kg to 80kg. SPECS: Backrest recline, upright to full

BEST SUITED FOR: Up to 170kg.

recline of 140°, No tilt.

Height less than 150kg. SPECS: Adjustable support - height. KEY FEATRURES: • Compact paediatric size shower trolley.

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

• Hydraulic or electric height

years. Height: 76cm to188cm.

adjustment.

Weight: 1kg to 113kg.

• Mattress available in 40 different

NEW

SHARKY

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

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

Seat backrest recline, 5° forward to 25° backwards. Adjust support – seat,

in supine when shower chairs

backrest, height.

do not provide enough support.

KEY FEATRURES:

• Versatility of toileting, showering and

avantinnvoations.com.au

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

SPECS: Available in 3 sizes – 1,2,3.

colours to suit your child’s preference. This product allows for showering

bathing system all in one. • Varied support options help clients

maintain optimal positioning. • The HTS comes in three sizes, each with a wide range of adjustment. As your child grows the chair can adapt, giving you years of useful service. The HTS is a shower/commode chair that

70 SO U RCEKI DS

.CO M . AU

hen one of your miracle babies is diagnosed with a major heart condition in-utero, and then needs major surgery during the middle of a global pandemic, it’s an understate ment to say the journey of parenthood has been an emotional rollercoast er. For Rebecca Fitzgerald and husband Mitchell the last two and a half years have been marked by stress but touched by hope with the arrival and survival of their much-longed-for daughter, Rebecca and Mitchell, Audrey. from Belair in South Australia, had struggled to conceive and five years to welcome a healthy, ago were thrilled happy, typical boy, Declan, born young after extensive IVF. They were then overjoyed to discover they were pregnant, again via IVF, two years later. But Audrey’s pregnancy was far from normal. At 20 weeks they were told their baby had significant issues with its heart and they were encouraged to undergo an amniocentesis to gain a clearer picture. “Having gone through IVF for both kids they were like miracles to us so we didn’t want to take the risk of an amniocentesis because the 1/200 chance of miscarriage was too us,” Rebecca remembermuch of a risk for s. “We would have found out if there more chromosom were al abnormalities that could have been associated with the heart condition, but we knew we would love her when she comes out, however she comes out.”

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

can be placed on the toilet or used on its own. activerehab.com.au, doability.com.au, medix21.com. au, specialneedssolutions.com.au, urgoform.com.au

62 SO U RCEKI DS .CO M . AU

IS NOW A REGISTERED NDIS PROVIDER ISSUE 27 / WINTER 2021

SUBSCRIBE TODAY Be the first to read it and have Source Kids delivered direct to your mailbox. $35 for 4 issues.

Independence in young adults PRODUCT REVIEW: S TA ND ER S AND WALKERS

NDIS: Independent

OCI

AT I ON

CEREBRAL PA L SY

assessments Funding Sensory Equipment

MANAGING SUPPORT WORKERS MADE EASY!

101

Subscribe at sourcekids.com.au/subscribe

PRODUCT REVIEW

SPEC I AL TOMATO E IO STROLLER

AGE: Up to 12 WEIGHT: Up to 41kg HEIGHT: Up to 127cm KEY FEATRURES • T he EIO Push Chair Includes an 8-point harness, padded seat back and laterals and head support. Large canopy and shopping basket also included in the price. • Grow the stroller with the compatible Liners or Sitters to provide more support where required. The Special Tomato EIO Push Chair is the best of both worlds… A stroller that provides mild to moderate positioning support AND a light-weight stroller that provides all of the bells and whistles that make it easier for the parent on the go! dejaymedical.com.au

T C Y A

J A Z Z A D VA N T A G E REHAB PUSHCHAIR KEY FEATRURES • T ilt-In-Space and back rest

recline

• Sprung suspension absorbs vibrations and ensures a

good riding pleasure without compromising steering. • Highly supportive with several setting options so a child can sit or lie in cosy comfort for a long time. astrisPME.com.au

C O N VA I D R O D E O AGE: Up to adult WEIGHT: Up to 77kg HEIGHT: Up to 175cm KEY FEATRURES • 10-45 degrees of adjustable tilt. • 90-105 degrees of seat-to-back angle adjustment. • Height and angle adjustable push handle and Elevating leg rest with one piece footplate. The Convaid Rodeo is a popular pediatric

T C

BINGO EVO PUSHCHAIR

KEY FEATRURES

• Grows with the child. • Multi-functional seat unit . • Central operating elements with easy handling.

tilt-in-space wheelchair that is convenient,

Modern, sporty design, high

lightweight and folds compactly.

support, all-terrain pushchair

It is fully customisable to meet user’s

with comfortable seating and

specific therapeutic needs and provides 5

responsive control.

years of growth capability through its seat

astrisPME.com.au

depth feature. dejaymedical.com.au

I SSU E 28 | S P R I N G 2021 75

PRODUCT REVIEW

H I P P O C A M P E A L L-T E R R A I N W H E E L C H A I R

WEIGHT: Up to 130kg

Y A

HEIGHT: 121cm to 181 cm • S turdy and reliable, it has undergone stringent safety and resistance testing. • Fast assembly and weighs 17kg (37.5lbs) for easy handling and transportation. • Practical and lightweight all-terrain beach wheelchair, with fold-down seat back, removable push bar and detachable wheels. astrisPME.com.au

KOOL STR IDE ALL TERR AIN WHEELCHAIR

HEIGHT: Up to 65cm

WEIGHT: Up to 70kg T

KEY FEATRURES • Lightweight aluminium frame

• Quick release wheels for easy fold down and

transport

For all types of outdoor adventures featuring extendable rear wheel so as the user grows the wheels can extend to maintain stability and control. astrisPME.com.au

MYGO

KEY FEATRURES

MIGHTY LITE LIGHTWEIGHT PUSHCHAIR

• Flexible sacral support assists in

WEIGHT: Up to 68kg

WEIGHT: Up to 130kg HEIGHT: 121cm to 182cm

the correction or accommodation

HEIGHT: Up to 58cm

of pelvic tilt.

KEY FEATRURES

• 4 chassis options for use indoors and outdoors. • Hip guides provide midline positioning and lateral support and can be off-set to accommodate asymmetries. • A llows therapists to optimise the postural care of children with moderate to complex special needs. astrisPME.com.au

X R O V E R M U LT I F U N C T I O N A L O U T D O O R S T R O L L E R WEIGHT: Up to 125kg KEY FEATRURES • Front & rear frame arches to protect the head and body. • S afety belts with five-point safety buckles. • Rear axle wheel camber ensures stability and decreases risk of side overturn. xRover is equipped with many features that make it ideal for most outdoor terrains from city streets, to the beach - even snow - and can also be attached to the back of an adult bicycle so everyone can enjoy the ride. astrisPME.com.au

76 SO U RCEKI DS .CO M . AU

• L ightweight folding frame. • Adjustable seat and backrest angles. Option of 15° or 22° seat angle (tilt) and 85°, 90° or 95° back angle. • Provides various options for easy positioning, maximum comfort and in-built features for growth. astrisPME.com.au

T C Y A

QLD

I SSU E 28 | S P R I N G 2021 77

QLD

DID YOU KNOW?

1 in 14 children have a hidden condition called Developmental Language Disorder

Speech & Language Development Australia is the nation’s peak body supporting and advocating for the needs of children and young people with speech, language, and related disorders.

We provide a range of services including The Glenleighden School, School Support Services, Allied Health Assessment and Therapy Services, Professional Learning, and Research and Advocacy.

The Glenleighden School Australia’s leading specialist speech and language school for students from Prep to Year 12. We utilise approaches that are engaging and effective for students with speech, language, and related disorders. Teachers implement the Australian Curriculum with educational adjustments to support each student’s academic achievement. Therapists provide group-based intervention targeting skills underpinning the curriculum, as well as addressing barriers to participation in everyday life.

Find out more at www.glenleighden.org.au

www.salda.org.au 78 SO U RCEKI DS .CO M . AU

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TO ENTER THE DRAW TO WIN ONE OF THESE GREAT PRIZES UP FOR GRABS GO TO SOURCEKIDS.COM.AU/WIN

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Live your life to the fullest

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I SSU E 28 | S P R I N G 2021 79

T NC SW A // W ACT SN

8 0 SO U RCEKI DS .CO M . AU

NSW / ACT

Self care tips for parents and carers FACEing lockdown.

F – Focus on what’s in your control. A – Acknowledge your thoughts and feelings. C – Come back into your body (exercise, stretches or breathing exercises can all help). E – Engage in what you’re doing.

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I SSU E 28 | S P R I N G 2021 83