End meal time
OUR 3
Feeding therapy
30t h
U
0TH ISSU R3 E
H 0T
ISSUE • O
ISSUE 30 / AUTUMN 2022
battles
NDIS:
Changes to AT r u l e s
Autism T O N Y AT T W O O D E XC LUS IVE
telepractice
Has it worked?
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CONTENTS
38
5
40
We Love
Hemi hero – life
7 Bek’s story: A
45
beautiful mind
The transition to
10 Understanding autism
12 Myths about autism
13 Dad – A film about autism.
14 Federal election focus
incredibly privileged to be joining Source Kids as Head of Content, just in time to celebrate our 30th edition. So much has happened in those 30 editions – the best of times and the worst of times. But we couldn’t be more proud of the amazing Source community that has been created – a nurturing and supportive tribe who inspire us all with their strength, honesty and passion for their kids. Our Autumn issue explores the myths, beauty
49 What does a meltdown feel like to an 11-year-old?
52 Therapies you can
How to create a sensory-friendly
Little
environment
Misunderstood:
58
Autistic girls
27 Stimming the tide
Competition corner
61 Video game
28
therapies for
Sister act: Learning
cerebral palsy
to be their authentic selves
Helping avoid meal
Professor Tony Attwood, for his generosity in
time battles
divulging “all his secrets” to help our families.
33 What is ARFID?
to bring our Expos to you all and forge even more
38
meaningful connections with our tribe.
Stronger together
Bek
meltdown
23
Feeding therapy:
Now, where’s that 30th edition cake?
takes us inside a
57
30
a year with travel back on the table. We can’t wait
46 Author Clem Bastow
do at home
to be more inclusive.
Finally, how wonderful it is to be heading into
it work?
In The News – latest
and challenges of autism, and what we can all do We must thank world-renowned autism expert,
telepractice – did
19 stories No, Emma has not dyed her hair. I’m Bek and I am
with half a brain
- Purple Day for epilepsy
63 Adaptive eating products
64 Travel for Teens
65 Hitting the ice
68 Product review: Seating and positioning aids
72 Watches and reads
MAGAZINE HEAD OF CONTENT: Rebekah Devlin PRODUCT EDITOR: Kelly Wilton HEAD OF SALES & BUSINESS DEVELOPMENT: Matthew Rainsford, matthew@sourcekids.com.au // 0409 418 362
SOURCE CO. PTY LTD: PO Box 690, Noosaville QLD 4566 ABN 63 650 961 489 // sourcekids.com.au Send all letters and submissions to info@sourcekids.com.au Editorial and advertising in Source Kids is based on material, written and verbal,
HEAD OF EVENTS: Naomi Sirianni, naomi@sourcekids.com.au // 0447 755 043
provided by contributors and advertisers. No responsibility is taken for errors or
GRAPHIC DESIGN: Emma Henderson PUBLISHER/CEO: Emma Price
All material in Source Kids is subject to copyright provisions. No part of this
4 SO U RCEKI DS .CO M . AU
omissions, and opinions expressed do not necessarily reflect those of the publisher. publication may be reproduced without written permission by the publisher.
FUN STUFF
Put your ‘Hoodie Up’ to support autistic people
S A F E T Y B A G TA G S Never feel alone no matter what you are experiencing. The Safety Bag Tag is an initiative to ensure ALL Australian school students have easy and fast access to phone numbers appropriate for their welfare and wellbeing. The free tags are placed onto students’ backpacks and contain phone numbers and QR codes for the Kids Helpline and Lifeline, as well as contact numbers for school and home and names of safe people in their lives. For high school students, there
Hoodie Up day 2022 is April 4.
If you, or your children, know
are more discrete wallet cards featuring QR codes
Amaze’s Hoodie Up campaign
someone who is autistic, or your
that simply slip into a wallet or purse. The goal of
– held every April during World
school has autistic students,
the Safety Bag Tag Initiative is to keep kids safe,
Autism Acceptance Month – raises
this is the perfect opportunity to
by giving every student easy access to a person or
money to deliver vital support to
increase understanding, show
organisation to talk to in times of need, and talk in-
autistic people and their families.
support and celebrate the autistic
confidence - ‘No matter what they were dealing with
A hoodie may seem an odd
people in your life and community.
in their life’. The goal is to see every Queensland child
choice to celebrate autistic
By gathering together and putting
with a Bag Tag Mate attached to their school bag by
people, but the snuggly item of
our hoodies up, we’re showing a
2025, and every Australian student by 2030.
clothing can come in very handy
little more understanding of how
To order your free tag, go to safetybagtags.org.au
when autistic people experience
we can all support and embrace
sensory sensitivities and become
autistic people and celebrate
overloaded by stimuli in their
the diversity autism brings to
environment. Wearing a hoodie
our world. To be involved, head
over the head can block out bright
to: amaze.org.au/get-involved/
lights and busy environments,
hoodie-up/
which can be calming.
TA K E A WA Y T H E F E A R O F N E E D L E S NeedleCalm™ is a single use adhesive pad with biocompatible medical grade silicone designed to promote comfort and minimise the perception of pain associated with needle-related procedures. It contains no medication and needs to stay cool prior to use. Simply place, press and push! And best of all, they're an Australian company. needlecalm.com.au
I SSU E 30 | AU T U M N 2022 5
S U R RO U N D T O OT H B R U S H BRUSHING MADE EASIER! Is brushing teeth a never-ending battle at your house? Surround Toothbrush’s compact triple-headed pad with soft angled bristles ‘hugs & surrounds’ teeth, which allows cleaning of all surfaces simultaneously with every stroke. Fully covered with a soft, non-slip surface for better grip and safety, it also has an ‘extra-long’ handle (adult version) to make it easier to hold onto as well as keeping carers’ fingers away from the mouth. Oral care is made quicker, easier and more efficient for children and those with dexterity issues, making it the perfect tool for those with special needs. Also available, the Open Wide® Disposable Mouth Prop for those who have difficulty in maintaining an open mouth or cooperating. surroundtoothbrush.com.au
JOY BOXES
DUKIES ‘21’ BOARDIES
Joy Boxes are sent to a
Have you heard of DUKiES? They are stylish board
child caring for a family
shorts (or boardies if you’re one of the cool kids) made
member with an illness
right here in Australia and worn by celebrities around
or disability. Joy Boxes
the world including the Kardashian clan and Elsa Pataky
aim to re-connect young
(aka Chris Hemsworth’s other half). The Queensland-
carers to the joy and
based swimwear design team is producing a limited
wonders of childhood via
edition set of boardies in support of the Down syndrome
a seemingly simple box
community. The designers have strong connections
of toys including games,
with two Down syndrome families on the Gold Coast
puzzles, toys, books or
and wanted to give back to the community and raise
school supplies.
awareness in a fun and fashionable way. dukies.co
caringkids.org.au
AUTISM TRAVEL WITH TRAVENGERS The team from Travengers has just the thing for our young people who want to explore the world (all from the comfort of home!). Travengers is offering the Source community a FREE Virtual Travel Group session - open to young adults aged 15 to 35 (15 to 17-year-olds must sign in with an alias or parent’s name). To redeem your free session, register using the code SOURCEKIDS22 travengers.com.au
MY STORY
A beautiful MIND I remember every detail of that day in September, 2017. The day an OT excitedly ticked off my two-year-old son’s atypical behaviours on her checklist, as I sat numb, not really understanding what she was saying, but understanding enough to know my world had just fallen apart. Does he like his nails being cut? No? That’s an atypical behaviour. What about when you point at something, does he look in that direction? Not really? Oh, that’s another one. Her delight was palpable… and devastating. She was telling me there was something "wrong" with my precious boy. The person I loved most in this world. I returned to my car and sobbed inconsolably, trying to explain to my husband over the phone what had happened. All while my darling boy sat in his car seat saying ‘mummy sad’. What I didn’t know then, and what I would tell that awful woman now, is that there is nothing "wrong" with my son. His brain just works differently to mine, and especially differently to hers. Because he is the most empathetic, kindhearted soul who lights up a room and is adored by everyone he meets – which is a lot of people, because he will bound up to strangers and say hi, flashing his effortless grin or making friends with random kids at the playground. I would tell her that I feel more pride than I ever thought possible. That each achievement
would be amplified because of his challenges. That day set into motion my journey as a special needs parent. Of course, I had always been on that journey, now I just had a title. So here I am, the mother of two cheeky, affectionate and firecracker autistic children – Jake, 6, and Sophie, 4. I have thrown myself into learning, connecting, advocating, supporting and loving. I have found there is such need among parents and carers for more information, more support and more practical help. Has it been hard? I’ve cried more tears than I can count. Gotten into arguments with mums at playgrounds because my son has bitten their child. Questioned my parenting pretty much daily. Absolutely lost the plot at my kids for small things because I’ve been so completely and utterly mentally spent. Taken it out on my husband because I couldn’t yell at my kids. Lost my son during singalong at the library and had him found by a stranger outside in the carpark. Felt like I couldn’t go on even a second longer. And cried when my son had his first slice of pizza after years of trying. I’ve raged against judgement, against exclusion, and demanded more for my kids. More acceptance. More respect. More appreciation for the beautiful and unique children they are. I have been able to see the world through their eyes. And you know what? It’s spectacular.
They say it takes a village to raise a child. But when you are a special needs parent, your village tends to be so much smaller than most. And you need that village more than most. I am so proud to have joined Source Kids as Head of Content because Source offers parents that village. And that’s what makes all the difference - knowing you are not alone. We want Source to be your haven. We have our Source Mama group to inspire, nurture and support, so that when you feel like you can’t go on, you are carried by your village. We want you to share your stories, your heartbreak, your triumphs. We want to cheer you and your kids on. Because our kids are phenomenal. And they are so worthy of celebrating. -------By Rebekah Devlin
INSPIRE, EMPOWER, UNITE Mums raising children with special needs
Join the Source Mama community now! @sourcemama sourcemama.com.au SOURCE MAMA I SSU E 30 | AU T U M N 2022 7
SYDNEY | NEWCASTLE | CANBERRA | YOUNG | MELBOURNE | BRISBANE
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Understanding
AUTISM
Difference is not a defect. Neurodiversity brings so much to our community, and we all can do more to promote inclusivity.
A
utism is Australia’s most prevalent disability among young people. There are 144,000 NDIS participants aged 0-24 with autism listed as their primary diagnosis which makes up more than half the people on the NDIS in that age bracket. According to Victoria’s peak autism body, Amaze, more than 80 per cent of Australians know an autistic person. But stigma and stereotypes still abound. Trying to pigeonhole a “typical” presentation of autism is like trying to describe the colour red. There is a huge variance, and every shade is different. Even within the same family, autistic siblings can vary greatly in their presentation and sensory preferences. There are however, common behavioural traits, and for the purposes of diagnosis, doctors work from a list of criteria in the DSM-5 (a manual for assessment and diagnosis of mental disorders). Still, many autistic people slip through the diagnosis cracks, and increasingly, adults are being diagnosed after a lifetime of struggling with feelings of being “different”. Brisbane-based Professor Tony Attwood is considered a world authority on autism, but is calling for more autistic people to become paediatricians, psychologists, occupational therapists and speech therapists to bring their experience to guiding and shaping support and therapy programs for the next generation of autistic children. He, and many in the autistic community, want more authentic voices to contribute to the public discussion on autism, designing programs that will not
10 SO U RCEKI DS .CO M . AU
harm our children, and finally moving away from the deficits focus which has plagued autistic people for so long. It is hoped that by listening to autistic experience, that the broader community as a whole will embrace the difference autistic people bring, that we will stop seeing autism as something that needs "curing", and celebrate the extraordinary gifts and perspective that neurodiversity brings to our society. By Rebekah Devlin
What is autism? Autism is a neurodevelopmental
Autism may change the way that
condition that affects the way people
individuals interact with other people,
communicate and interact with the world.
and autistic people may find the world
Characteristics generally appear in early
a confusing place. Every autistic
childhood and will be present in some
person is different, which means that
form for life. Autism is not an illness or
each person has unique strengths and
disease – it is a lifelong disability.
challenges.
People are born autistic and remain so all their lives.
AUTISTIC PEOPLE MAY HAVE: • Unique ways of communicating and interacting with others • Different behaviors and different physical movements • A strong interest in one topic or subject • S trong or different reactions to what they see, hear, smell, touch or taste • Preferences for routines The term “spectrum” is used to describe the range of characteristics and abilities found in autistic people – it does not refer to a linear scale. The spectrum looks more like a wheel (see illustration left) as autism consists of many different traits or ways in which the brain processes information. Source: Amaze
AUTISM
What other conditions can occur alongside autism? Autistic people may also be diagnosed with intellectual disability, language delay, epilepsy, attention deficit hyperactivity disorder (ADHD), anxiety and/or depression. In practical terms, this means each autistic person will have diverse needs for support in different areas of daily life to enable them to participate and contribute meaningfully in their community.
WHAT CAUSES AUTISM? There is no known cause of autism. Right now, evidence suggests that autism results from changes to the development and growth of the brain. These changes may be caused by a combination of factors, including genetics. Autism is not caused by parenting or social circumstances, and nor is it caused by vaccination or other medical treatments.
I THINK MY CHILD MIGHT BE AUTISTIC. WHAT SHOULD I DO? If you think your child is autistic, you can seek an assessment from a team of professionals experienced in the field. However, this can be a long process and there are other things you can do to support your child immediately while waiting for an assessment. Talking with members of the community can really help with this. Joining online or offline groups, reading articles written by autistic people and speaking to other parents of autistic children will help you support your child. If you do have your child professionally assessed, it’s important to know the process includes a series of tests over several appointments that will help the team of professionals decide if your child meets the diagnosis criteria. Children can be assessed from around 18 months of age. To organise an assessment, you can contact government-funded teams directly but you may need a referral from your GP or paediatrician, which is always a good place to start. Source: Amaze Amaze has a great website full of evidencebased information where you can find much more detail about autism, you can also talk to an experienced autism advisor through Amaze’s free helpline Autism Connect on 1300 308 699 or via webchat at amaze.org.au/autismconnect
I SSU E 30 | AU T U M N 2022 11
AUTISTIC PEOPLE ARE INCAPABLE OF EMPATHY
about autism
THERE IS AN AUTISM EPIDEMIC
The definitions of autism have changed over time, and we have better ways of assessing and diagnosing ASD. We now recognise a more comprehensive range of characteristics as forming part of the Autism Spectrum. It is likely that many people diagnosed based on today’s diagnostic criteria would not have received a diagnosis if assessed against past definitions of autism. An increase in autism awareness and understanding has also led to improved developmental monitoring and detection of the early signs of autism, with parents and professionals more actively seeking referral for autism assessment. Using the term ‘autism epidemic’ carries the implication that autism is contagious. It is important to note that autism is not an illness or a disease, and perpetuating this myth is likely to create unnecessary community concern and further stigmatise autism.
ALL AUTISTIC PEOPLE HAVE AN OUTSTANDING SAVANT SKILL
A myth often popularised in the media — such as the movie Rain Man and the television series The Good Doctor — is that all autistic people have savant skills. A savant skill is an exceptional talent in memory, mathematics, music or art. For example, one child may have perfect pitch and be able to play music from ear, while another may be able to perform complex mathematical calculations in their head. Research tells us that up to 1 in 3 autistic people have some sort of savant skill. But this is not everyone and if your child doesn’t have a special talent, they are hardly alone. However, autistic people often have special interests, which can lead them to learn everything they can about their favoured topic. While others may confuse this with savant abilities, it simply reflects their keen interest in the topic.
AUTISTIC CHILDREN DON’T WANT TO MAKE FRIENDS
While a few autistic people are genuinely aloof, most do want to have friends. Unfortunately, this doesn’t always come easily. For an autistic child, being social can make them feel very anxious. Conversation is a skill many have to learn, but because they can have trouble reading body language and tone of voice, they can be unsure of the correct thing to say and do. If things go badly, children can start avoiding social situations, which they might associate with failure. However, with the right supports in place, most autistic children can learn to make friends. Talk to your therapy provider about ways you can help your child to socialise successfully – start with short, structured playdates to allow your child to experience success and build from there.
Many people worry about ‘putting a label onto a child.’ However, a diagnosis is not a label, it is a
DIAGNOSIS V LABEL Why a diagnosis DOES matter, says Amaze
medical term. You do not need to tell everyone you meet that your child has a diagnosis. Whether families disclose is entirely up to them. A diagnosis is essential to getting the correct therapies in place and to access funding. Your child needs and deserves to have the best chance of developing as much as they are able. They need early intervention. To deny that to a child is not at all supportive or helpful. Remember that the diagnosis may be something you need to tell people about now. However, this may not be the case for life. Many autistic adults do not tell everyone about it. They tell the people who need to know only. A diagnosis is very important, with it you can access the help your child needs.
12 SO U RCEKI DS .CO M . AU
Source: Autism Association of Western Australia and Autism: What Next?
MYTHS
Autistic children can have difficulty seeing the world through another person’s eyes, sometimes called ‘theoryof-mind’. This means they may not always understand why another person is sad or fearful, and can misread cues such as facial expressions, body language and tone of voice. Unfortunately, this can lead to them saying or doing the wrong thing in response, whereas a person without autism will be able to read the situation better and respond in a more appropriate way (even if they don’t really care at all!) Autistic children may also have trouble moving their facial muscles to express their emotions. All this is quite different from not caring about another person’s feelings....
AUTISM Max and Mat in DAD.
WHY LANGUAGE MATTERS For many autistic people, autism is central to who they are and how they experience the world. They prefer to use ‘identity first language’ such as ‘autistic person’ or ‘autistic’, rather than ‘person first language’ such as ‘person with autism’ or ‘person on the autism spectrum’. This is different to other disability sectors that prefer ‘person first’ language as they say their disability
Michael and Connor.
does not define them. This is also true for some in the autism community, who may prefer to use ‘person first language. Identity and language are very personal matters – the important thing is that you respect each individual’s personal preference. Autism peak body Amaze aims to use language that focuses on
Dads share their experiences of parenting an autistic child Have the tissues close by, Aussies dads have opened up about parenting an autistic child and it is powerful, poignant and incredibly insightful. If you haven’t watched Autism Awareness Australia’s DAD film, set aside 36 minutes and do it now. Fellas, you especially need to. The 12 dads from all walks of life, cover everything from their child’s diagnosis, feelings of helplessness, their struggles, their successes and their love and pride for their children. Dads featured in the film include neurosurgeon, Professor Brian Owler, ex-Australian Rugby rep, Mat Rogers and broadcaster Ian Rogerson. Autism Awareness Australia chief executive Nicole Rogerson says the film was created to provide guidance, information, and support to fathers with autistic children.
strengths. Phrases like ‘a victim of autism’ or ‘suffering from autism’ can make an autistic person feel like their autism is inherently negative and bad. Autism has positives and negatives and only focusing on the negatives can harm autistic people’s
“When children are diagnosed with autism, the support structures in place are often tailored towards mothers - but where does that leave the dads?” she says. Richard Peake, who is also in the film says he hopes DAD will create a broader, more positive dialogue in society around autism. “Being a dad to an autistic child doesn’t come with instructions.” he says. “It can often be a lonely place. Not many, if any, of your mates or male family members can relate. There is no one to bounce ideas off. “I hope the film shows dads like me that it doesn’t have to be quite so lonely, and actually talking about ‘it’ can only help you and your child.” DAD can be viewed free of charge at dadfilm.com.au -------By Rebekah Devlin
mental wellbeing. You might also hear the term ‘neurodivergent’ used to describe a group of people whose brain is ‘wired’ differently to the majority. This label is generally inclusive of autism, ADHD, epilepsy and more. The opposite of neurodivergent is ‘neurotypical’. It is important to remember that neurodivergent doesn’t just mean autistic, and neurotypical doesn’t just mean non-autistic. At Source, in consultation with our community, we have chosen to use identity-first language moving forward. Everyone has the right to be described in a way that feels right to them. So, if you are unsure what the person you are talking to prefers, simply ask. - With Amaze
I SSU E 30 | AU T U M N 2022 13
AUTISM
* * *
Autistic students are half as likely to complete Year 10 than the general population, and only half as likely to complete VET or Uni courses than those with other disabilities 50-70% of autistic people experience mental health conditions, with a suicide rate 9 times the general population Autistic people overwhelmingly want to work yet are 3 times more likely to be unemployed than others with disability, and nearly 8 times the rate of people without disability
* A
20-36 year lower life expectancy
ustralia’s autistic population is estimated to be around 650,000. And yet, quality of life is still alarmingly poor – experiencing significantly worse life outcomes than other Australians, including other disability groups. It is why the Australian Autism Alliance is demanding that autism becomes a central issue in this year’s federal election. Education outcomes, physical and mental health, employment and social connections are the four key areas the Alliance wants front and centre during the election. It is seeking commitments from political parties to redress the serious and lifeaffecting issues facing autistic Australians. The Alliance is a diverse national network of 12 key autism organisations
14 SO U RCEKI DS .CO M . AU
ELECTION FOCUS on autism
representing, and led by, autistic people, peak bodies, service providers, and researchers. And with one in four people having an autistic family member, it is an issue that the Alliance hopes the Australian public will get behind, putting pressure on our politicians to act. “Autistic people have unique and diverse talents but still experience significantly poorer outcomes in most aspects of life than other Australians, including other major disability types,” the Australian Autism Alliance says. Autism crosses over many portfolios disability, education, employment, health, social services - there is no single place that it belongs. And so the Alliance is calling on all major parties to make the following four main commitments with the aim of “Shifting the Dial on Autism” to improve the lives and lifelong outcomes for ALL autistic Australians and their families: 1. Develop and fund a National Autism Strategy to provide a coordinated national approach. 2. Convene an ‘autism and COVID Summit’ in 2022” to identify initiatives that address the longtail adverse impacts of COVID and harness the unique talent of autistic people who have much to offer and enable them to be part of the solution to current and future workforce shortages. 3. Develop a National Roadmap to improve health and mental health outcomes for autistic people as has been
done for people with intellectual disability. 4. Ensure an enduring and effective National Disability Insurance Scheme (NDIS) by recommitting to its original vision. To get involved, head to australianautismalliance.org.au and sign up to find out more. You can also promote the #shiftthedial campaign through your various social media channels. By Rebekah Devlin
NOT A PUZZLE TO BE SOLVED A jigsaw or puzzle piece is sometimes used as a symbol for autism. But for many, it is highly offensive as it suggests autism is a ‘puzzle’ or ‘mystery’ that needs to be solved - something autistic people feel is not the case. There are still some autism organisations that use the puzzle symbol, but increasingly, the neurodiversity rainbow infinity symbol is being used as a positive image of autism. Source: Amaze
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NEWS IN BRIEF
In the NEWS
Hand difference resources People with a hand difference, together with their families, will be supported by Aussie Hands’ new online Resource Toolkit and Peer Support Network. These resources include: Expecting and New Parents - empowers new parents with information and strategies for welcoming a baby with a hand difference. School Age - equips children to introduce their hand difference, achieve self-care and independence, make friends
New Assistive Technology rule changes to help NDIS participants The NDIA has announced changes to the way Assistive Technology purchases are approved – making it easier for participants to get the equipment they need. The limit for mid-cost funding for Assistive Technology has been lifted from $5,000 to $15,000. NDIS data shows that only 5 per cent of participants requiring equipment costing more than $15,000, so most will come in under the new rules. This means that for most AT users, once equipment is in their NDIS plan and budget structure, they will be able to liaise with a NDIS Registered AT Provider and AT Advisor, (ie their therapist) pick the correct equipment for their needs, and purchase it immediately. They will still need written evidence that the equipment they have selected meets the stated needs as outlined in their plan. This can be a letter or email from their therapist. The most-commonly purchased AT within the $15,000 price range includes manual wheelchairs, specialty beds and bathroom chairs/stools. The changes were welcomed by NDIS Provider Astris PME managing director, Steve Joyce. “This move towards pre-approval is an excellent step forward for our clients, and
for thousands of Australians looking for funding for Assistive Technology up to $15,000,” he says. “Once they have the funding allocated to their plan, they can go out and review the different providers, and trial a range of equipment, until they find the solution that suits them and their personal circumstances the best. This is great for choice and control, and in most cases will strip out unnecessary red-tape and delays in participants securing their life-changing equipment”. The NDIA have automatically added equipment funding to the plans of 15,000 participants that had already trialled equipment and had submitted a funding application via their therapist for equipment that costs less than $15,000. Any participant that has received notification as to this can now liaise with their preferred supplier and purchase their equipment. For high-risk equipment, their occupational therapist or physiotherapist must be present during the delivery and fitting. Participants that have not received a notification from NDIA, and would like to get an update, should contact the NDIA directly on 1800 800 110, or via email enquiries@ndis.gov.au
and build confidence. Teens - encourages teenagers to feel good about themselves, prepare for further study and work, and gives positive role models. The Resource Toolkit offers tips, lived experience stories and activities. The Peer Support Network enables individuals with a hand difference, parents or carers to select an experienced and caring mentor to help with issues such as building confidence, improving communications skills and developing a more positive self-image. aussiehands.org
New autism research A new study has uncovered evidence which suggests that the brains of autistic males and autistic females are organised differently, which could contribute to how each gender experiences the condition. It is hoped the study, published in The British Journal of Psychiatry may pave the way for better diagnostic tools, particularly for girls, as well as informing the development of gender-specific therapies. Researchers at Stanford University School of Medicine compared hundreds of MRI brain scans from autistic children with images from neurotypical boys and girls and were able to differentiate between not just autistic and neurotypical brains, but also the difference between autistic girls and autistic boys. The autistic girls differed in several brain centres to autistic boys.
I SSU E 30 | AU T U M N 2022 19
2 0 SO U RCEKI DS .CO M . AU
Ask a plan manager! With autism the focus of this issue, it seemed the perfect time to ask our friends at Australia’s leading plan manager, Leap in! about early intervention, NDIS Plans and the types of supports the NDIS may fund for autistic children.
W
ith years of frontline experience at Leap in! HQ , Melanie E. is the perfect person to answer some of your most frequently asked questions about the NDIS. A note about language: After seeking input from our community, at Leap in! we’ve chosen to use ‘identity-first’ language. We know there are different opinions on this, and that people may use different language depending on what they’re comfortable with. IS AUTISM COVERED BY THE NDIS? Yes! More than 80,000 children under the age of 13 receive NDIS supports. But not every autistic child will be eligible for the NDIS. To be eligible, you must meet both eligibility and disability requirements. WHAT HELP MAY BE AVAILABLE FOR MY AUTISTIC CHILD? The pathway differs depending on your child’s age. Children under seven with developmental delay may access the Early Childhood Approach (previously called Early Childhood Early Intervention). A formal diagnosis is not required. If you are concerned about the development of a child aged 0-6, the easiest and fastest way to get help is to contact an Early Childhood Partner (ECP). A referral is not necessary. For children aged seven and over, access to the NDIS follows the same process as adults. Your child must meet the general eligibility criteria and complete an access
I N A S S O C I AT I O N W I T H
request. You’ll need to supply proof of diagnosis and evidence of the functional impact of the child’s disability.
Melanie knows!
HOW DOES THE EARLY CHILDHOOD APPROACH WORK? Under the Early Childhood Approach, an ECP assesses whether early childhood supports may be effective, provides recommendations for early intervention and connects you with relevant services or programs. They will also assist with an NDIS access request, if necessary. WHAT CAN I EXPECT FROM EARLY CHILDHOOD SUPPORTS? Early childhood support focuses on capacity building and therapies such as physiotherapy, occupational therapy, psychology and speech therapy. Parents are generally responsible for taking their children to appointments or activities and supporting them during attendance. WILL MY AUTISTIC CHILD AUTOMATICALLY GET THE NDIS WHEN THEY TURN 7? Eligible children aged seven years and over must transition to the NDIS. This process is not automatic and differs depending on the situation. Eligibility requires a diagnosis and evidence of significant and permanent disability. It is best to apply at least six months before your child turns seven to ensure no gap between supports. WHAT CAN THE NDIS FUND FOR AUTISTIC CHILDREN? The therapies and supports funded by the NDIS differ from person to person. Your child may receive funding in one or more of three categories. 1. Core supports that help with consumable items and daily living. 2. Capacity Building supports such as therapies that develop new skills and build independence.
3. Capital supports for high-cost assistive technologies like mobility and communication aids. CAN I USE MY 8-YEAR-OLD’S PLAN TO PAY FOR NIGHT NAPPIES? Yes, if it is reasonable, necessary and related to your child’s disability. The NDIS will only fund everyday items when, because of a disability, a child needs things that other children their age don’t. In this case, you can purchase nappies or pull-ups from the Consumables budget within your child’s Core supports funding. MY 13-YEAR-OLD AUTISTIC CHILD STRUGGLES TO MAKE FRIENDS. WHAT CAN THE NDIS HELP WITH? If your child has a goal to make new friends in their NDIS Plan, the NDIS may fund supports to help them participate in social and recreational activities, learn new skills and gain confidence. I’D LIKE TO TRY A WEIGHTED BLANKET FOR MY CHILD. DOES THE NDIS COVER THIS? The NDIS is not satisfied there is adequate research or evidence that weighted blankets are effective or safe for young children, so it will not fund weighted blankets. Are you getting the most out of your child’s NDIS Plan? Feeling overwhelming and struggling to keep on top of it all? Leap in! can help. Call us on 1300 05 78 78 or email crew@leapin.com.au to speak with one of our team experienced in working with families on the NDIS and the Early Childhood Approach.
DO YOU HAVE A QUESTION YOU’D LIKE US TO ANSWER IN THE NEXT EDITION OF SOURCE KIDS? WE’D LOVE TO HEAR FROM YOU. SEND YOUR QUESTION TO MYSTORY@LEAPIN.COM.AU I SSU E 30 | AU T U M N 2022 21
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AUTISM
Misdiagnosed, or dismissed completely by the medical profession, girls often go years, sometimes decades, before receiving their autism diagnosis.
little
MISUNDERSTOOD "Oh, you don’t look autistic.” It’s the phrase that makes autistic people (and their loved ones) cringe. That’s because, many in the broader community still think in stereotypes and imagine an autistic person as a white, nonStudies have found girls get diagnosed verbal, young boy who struggles with eye two years later than boys. But for some contact. That, or Sheldon Cooper from girls, it can be decades before they are The Big Bang Theory (who according to the diagnosed. show’s producers, isn’t even autistic!). As girls can present with different Chances are an autistic girl or symptoms to boys, many are dismissed woman will not even enter by doctors as being “bossy” About 85% their mind. and “controlling” or just of autistic The current ratio of “shy” and sent home. autistic males to autistic Psychologists then see individuals females is often put at 4:1, but them again in their teenage have problems recent research suggests the years, suffering mental health every day with conditions like depression, actual figure could be as low as 2:1. eating disorders and anxiety. anxiety. While autistic boys are But often doctors will only more likely to have outwardly challenging address those conditions, while still behaviours, autistic girls are more missing the fact that they’re the result vulnerable to internalising issues and of undiagnosed autism and the insidious masking their feelings in an effort to blend impact of years of masking their true self. in – meaning they often slip through the ----cracks of diagnosis. By Rebekah Devlin
PRACTICAL HELP and insights for parents With 50 years’ experience, Professor Tony Attwood is considered a world authority on autism. Together with Tony, Source Kids has produced a series of videos covering a variety of key topics including What to do during a meltdown, When to tell your child about their diagnosis, How to find your child allies at school, Strategies to help build your child’s emotional awareness and Identifying the signs of anxiety.
Scan the QR code to watch or go to sourcekids.com.au
I SSU E 30 | AU T U M N 2022 23
Psychologist and one of the world’s foremost clinicians on autism, Tony Attwood, explains the horrific mental cost of misdiagnosis and how you can encourage your daughter be her authentic self.
How Do Autistic Girls Differ To Autistic Boys?
TRUST YOUR GUT… and make them listen When it comes to diagnosis, mother does indeed know best.
‘I shouldn’t have to repair
Tony Attwood has called
home, or in crowded and
on medical professionals to be less dismissive of
this, you should know this’. He says children often act very differently in a clinic setting to how they do at busy environments.
We’re only just discovering how to adapt “So as parents, you talk parental concerns, an in to Autism and we find that boys and girls to all these professionals particular, “listen to the (who say) ‘no, no, no’ (it’s have the same core characteristics, but mothers”. not autism) and you are may adapt to it in a different way. One “Often a mother’s wasting years trying to of the ways that the girls will adapt is concerns are interpreted find someone who takes realise ‘I’m not good at socialising, but I as neuroticism and you seriously.” like socialising, and I want to learn, so I’ll overprotective. But it’s a watch. I don’t want to make a mistake, I He encouraged parents to cry for help. Mum notices video as many behaviours don’t want to be seen making an error, things that other people as possible, as well as so I’ll observe people, I will analyse them, I won’t notice,” he says. come prepared, with will copy them, I will create a mask. “Mums know - mums see notes, if necessary, of I will fake it ‘til I make it. behind the mask, they see differences and missed To such an extent that the teacher has the effort that goes into development milestones. no idea of the amount of mental effort it and mum has to do the And don’t be afraid to push that goes into socialising - the effort and repairing when it goes for an assessment or seek energy is phenomenal, and it’s suppressed, wrong. And what you have a second opinion. to repair, you’re thinking in terms of agitation, and then released at home. So parents see almost a different character – what I call Dr Jekyll and Mr Hyde. So often the girls, I would say, are Why Are Girls So So you have to move away from the more creative and intelligent in how they conventional, withdrawn, classicallyaccommodate autism, by learning, often by Under-Diagnosed? autistic child and realise someone with personal experience, how to socialise. We are learning about autism all the time intelligence and creativity is trying to Considering autistic boys, their and for doctors - be that psychiatrists, accommodate those difficulties. adaptation can be total withdrawal, GPs, psychologists - it depends on when And also, autistic girls in particular becoming isolated, not engaging their training occurred. And if they are great with adults, it’s their peers with others. trained a number of decades ago, they that are the problem. And some, unfortunately would not be aware of the in teenage years, become latest developments on “Masking is What Is Masking? a recluse in their bedroom acting, it’s acting describing autism in girls – (because) it’s safe. But and women. So there can What an autistic girl is likely to do is neurotypical… be a problem of obsolete when they engage socially, identify who is popular and think ‘I but my concern information, and because they make mistakes and would like to be popular - what do they unfortunately their reaction the person in front of that do, how do they use their gestures, as a clinician, can be agitation, anger and be clinician doesn’t present in what do they talk about, what did they is that it is at quite abrasive to others. the “boy style” then ‘oh, wear?’ And so the autistic girl becomes horrendous cost.” they’re not autistic’. One of the things that the a psychologist and analyses people, Tony says. girls will do is avidly apologise An example is eye contact. personality and social behaviour. ‘oh sorry, I didn’t mean to Doctors say ‘oh she gave And so what she’s doing is choosing hurt your feelings’ and want everyone to me such a good eye contact’. Well, it’s someone as a guide, in a way, of how be happy, to a fault to a certain extent. But a bit like learning to read. Just because to be, and becomes that person - it’s the boys will try to socialise, it doesn’t work somebody looks at the page, doesn’t acting, it’s acting neurotypical. It is a and ‘I don’t know what I’m doing wrong mean to say they can read the words. Just brief ‘cure’ for autism, but my concern and the fault is in other people, not me’, so because she looked at your face, doesn’t as a clinician, is that it is at they can go into attack mode. mean to say she reads all your emotions. horrendous cost. 2 4 SO U RCEKI DS .CO M . AU
AUTISM
The current ratio of autistic males to autistic females is often put at 4:1, however recent research suggests the actual figure could be as low as 2:1.
WHAT CAN AUTISM IN GIRLS LOOK LIKE?
Recent studies do suggest some key differences between autistic boys and girls. Generally speaking, autistic girls:
Why Is It Harmful? With masking, superficially, the person is successful, has friends. It’s also a way in camouflaging your autism, imitating others. It’s being included and avoiding being bullied and teased because you’re part of the group. However, you’re not the authentic self. You become the person necessary for the situation, and it’s absolutely exhausting. And that energy depletion and lack of authenticity often leads to depression and psychological issues in adolescence. What I do as a clinician is encourage, especially teenage girls, to be the authentic self. With my friend and colleague Michelle Garnett, we have a program that we call for autistic teenagers “Being me”. (We explain that) It’s OK to be you. Explain yourself, don’t camouflage who you are. Actually be there, and say ‘I’m the sort of person who’ rather than become someone else who’s not you.
Are Autism And Anxiety Linked? About 85 per cent of autistic individuals have problems every day with anxiety. Not all have an anxiety disorder in the strength of expression, but it does affect their quality of life. There’s also round about 70%, especially in the teenager years, who have signs of depression. And some will have signs of intense emotions, meltdown, refuse to comply with the requests etc. So emotion, perception and regulation is a major concern and it can lead to the diagnosis of secondary conditions - which sometimes I find the anxiety or the depression or the anger is of far greater concern. Want to learn more? Tony and Michelle run autism workshops through Attwood and Garnett Events on various subjects, including autistic girls. Head to attwoodandgarnettevents.com for more info.
• Are more likely to ‘mask’ (cover up) their autism by imitating others and suppressing their autistic traits. • Are more likely to have better social and language skills. • Are less likely to have restricted or repetitive behaviours (although they might simply be masking them better). • Are more likely to have special interests that appear typical (such as an interest in animals, music, art or literature). • Are more likely to talk about their feelings, and therefore, are less likely to outwardly exhibit physical behavioural issues. • Have a strong imagination (might escape into the worlds of nature or fiction). • Not want to play cooperatively with female peers (for example, want to dictate the rules of play or preferring to play alone to maintain control). • Have a tendency to ‘mimic’ others in social situations in order to blend in. Source: Autism. What Next? and Amaze
I SSU E 30 | AU T U M N 2022 2 5
OCCUPATIONAL THERAPY PHYSIOTHERAPY PSYCHOLOGY SPEECH PATHOLOGY EARLY INTERVENTION
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STIMMING
Stimming THE TIDE
Stimming is a much-maligned aspect of autism - with some therapies focusing on stopping these self-regulation tools. Autistic adult and neurodiversity advocate, Thomas Kuzma, explains why he stims and how it helps sharpen, not hinder his focus.
H
Growing up, people would tell me off for ave you ever clicked your pen twiddling my thumbs, clicking my pen or while working? Tapped your foot spinning around in circles. That last one thinking about which letters you was in primary school, my spinning days should use in your Wordle? What are long gone! People used to say I was about the time you hummed to yourself either distracted or not paying attention to try to block out the noise of everyone and force me to stop. Their belief was talking? Well, you have been stimming. that sitting still would allow me to listen Stimming is a repetitive action used by more fully and concentrate on their words. both neurodivergent (autistic, ADHD, etc) Sadly, I instead spent my days straining my and non-autistic people to help them in energy levels focusing on trying to block their day to day life. out all the sounds going on around me. Stimming is short for ‘self-stimulatory Teachers I thought I could trust removed behaviour’ and relates to repetitive my only coping strategy and transformed behaviours used by autistic people. the simple act of listening into a task of Stimming is different for different people titanic proportions. but generally it relates to autistic people What people don’t using a tool to help realise about autism is regulate their emotions Having a repetitive that you hear everything and process their sensory action (a stim) helps going on. Even as I type environment. me to stay on task. this from home, I can There are many hear cars drive past, bugs, different forms of And without that stimming, like echolalia – coping strategy, my the air conditioner and airplanes flying over. repeating a sound or word energy gets drained Unlike non-autistic people over and over, which some – very quickly. who can block out noises, believe may help someone I sense everything. Having to process the information a repetitive action (a stim) helps me to stay that is being provided to them. Tactile on task. And without that coping strategy, stimulation – playing with an object that my energy gets drained – very quickly. provides stimulation. Or Proprioception Autistic people have a limited amount – rocking, swinging, jumping, tiptoeing or of energy per day. We need to watch that spinning to give a sense of balance. we don’t run low on energy, so that we can make it to the end of the day without melting down. We don’t have to use as much energy if we are allowed to stim. But stimming isn’t only used for stressful
situations, stimming can also be fun. As a kid, my spinning stim (physically spinning around) felt like fun, because my mates and I loved to disorientate ourselves. And when I started to meet other autistic people, I realised that stimming came in many forms and that people did it for a wide range of reasons. Stimming can serve all kinds of benefits, but most importantly, it helps improve quality of life by providing a source of comfort or enjoyment. When we accept people’s stims, we create safe environments and give everyone an opportunity to grow. Thomas is a Neurodiversity Advocate with Autism Spectrum Australia (Aspect), mentoring autistic teens, and talking to people about living as an autistic person. You can connect with him on twitter: @thomaskuzma91 or enjoy his twitch streams at tk_hubworld
I SSU E 30 | AU T U M N 2022 27
In the swim: Piper, Aurora and Lucy.
SISTER ACT
Sarah and Eric Vielle are determined that their girls will be themselves, always.
I
The Vielles at Piper's performance of Sleeping Beauty
2 8 SO U RCEKI DS .CO M . AU
girls, when she took her concerns to the t was a ham and cheese sandwich GP, she was immediately dismissed. that led to Sarah Vielle’s search for a “I’ve worked with kids on the spectrum diagnosis for her second daughter, Lucy. and this little girl, she’s just bossy,” he told At 18 months, when asked what she her, “she’s got a brilliant mind, she’s very wanted on her sandwich, Lucy was just clever, but this isn’t autism.” repeating back whatever filling Sarah had It would take another 18 months, said last, instead of saying her choice. And and another GP, before Lucy would be then she had a meltdown when her mum diagnosed by a paediatrician. didn’t give her what she wanted, despite Armed with a series of her asking for something else. home videos to back up her Sarah had a girlfriend “We say, ’yes, theory, she was taken aback over, who worked in early you’ve got your when the paed then asked to education and she suggested differences, see her five-year-old daughter, Lucy might be autistic. Piper. So Sarah did what all good but we’re not “She said ‘I couldn’t parents do, she hit google. focusing on that, help but notice her in the All of a sudden, the we’re focusing on background of the footage, behaviours made sense. who you are’.” you need to bring her back The licking of every surface because one is clearly at in public. one end of the spectrum and it’s a big Hiding under the table at a play centre spectrum’,” Sarah says. because she was overwhelmed. “I went home and watched the videos The rigidity and need to control and said ‘oh my goodness, how did I miss circumstances. all of that?’ Her terror at camera flashes or the “She’s lining up all her toys, she’s vacuum cleaner. playing the same games over and over But like so many mothers of autistic
FAMILY STORY
"I got in!".
again, she’s super quiet, fussy with her food, everything that’s the other end of the spectrum to Lucy.” Piper was diagnosed shortly after. “It was a relief to get an answer when Lucy was diagnosed, “If people don’t especially when you’ve been take you as you fighting for so long,” she says. “And then reality sets in. are, for who you This A-word is going to be are, then they’re in our lives for the rest of our just not the Indeed Piper is showing lives. That gets daunting. great promise. She has been The paperwork comes people for us." accepted into Queensland through alongside it, and that Ballet’s Foundations program and has gets overwhelming. The judgment you get performed in numerous productions for when you break the news to people and Brisbane City Youth Ballet. you get everyone else’s responses. And Sarah and Eric have been very conscious you think, ‘whoa now everyone’s got an of masking, and actively work on teaching opinion, no one wanted to help before, now everyone’s got an opinion about it and the girls to be their authentic selves. “That’s a big problem for a lot of they all still disagree with it’. So you have girls – they put this mask on, and act the to thicken that skin. way everybody thinks they should and “But having the direction was a great then they go home, rip the mask off and thing. Being able to go, ‘ok, this is the path meltdown and let the parents deal with forward. What do we do now to get the that,” she says. kids help’?” “We say, ’yes, you’ve got your When Aurora was still a baby, Sarah differences, but we’re not focusing on that, immediately noticed her stimming in her we’re focusing on who you are’. pram, moving her wrists and poking her “If people don’t take you as you are, tongue in and out. for who you are, then they’re just not the “She was six months to a year and my people for us. husband Eric and I we were ‘yep, there it “That’s a constant journey though, is’,” she says. because you’re constantly meeting new Aurora was diagnosed by the time she people, and so you have to keep was 2-and-a-half. Lucy was also diagnosed reinforcing it.” with ADHD at the same time. It’s a lesson Sarah is still learning also. In November last year, Sarah too was “I used to get upset socially with mum diagnosed with ASD and ADHD. friends, if they’d go out and didn’t include “Getting diagnosed as an adult is like me… I used to get caught up on things like someone handing you a pair of glasses and that. Now I’ve realised they’re simply not you refocus on every memory you’ve had and say ‘oh, now that makes sense. I wasn’t my crowd,” she says. “Learning to take this mask off has weird, I was overstimulated. I was autistic. allowed me to attract a whole new crowd of I still am.” people around me - people who appreciate People often ask what it’s like having me for who I am, and enjoy me for who I three autistic daughters. Sarah doesn’t am. They get me.” know any different. Which is not to say the journey has All three girls - now 10, 8 and 6 - have always been easy. Of course, there have different sensory and behavioural profiles. For Piper, her autistic traits have been “a been moments that have taken Sarah to her limits, and then pushed her beyond them. huge gift” when it comes to ballet. But she chooses to focus on all that “She’s learnt to channel it. She loves autism brings to her family’s lives. Lucy, structure and that’s why she loves ballet, she reckons, will run a company one day, because they are definite moves, you’re Piper has her ballet, and Aurora, she either doing it or you’re not,” Sarah says.
Piper ready to perform.
Trick or treat.
thinks, will either do something creative, or work with animals. Sarah herself is an astonishingly talented seamstress who makes elaborate pancake tutus, despite never having been taught how to sew. She simply turned garments inside out, used the girls as models and created the intricate multi-layer costumes. “I hate the word disorder in Autism Spectrum Disorder, it’s not a disorder, it’s a factor. If we have to call it anything, it’s a factor, it’s just a part of my personality. Does my factor bother anybody else? Well, I hope not, not negatively anyway, but I hope it does positively,” she says. “Autism is not something to be feared, obviously it comes in different levels and some people have more challenges than others on the spectrum, but we each have a gift as well that comes with it – it’s just our rollercoaster is bigger and lower than yours.” By Rebekah Devlin I SSU E 30 | AU T U M N 2022 2 9
FOOD
for thought
Talk to any parent of a toddler and they will complain about picky eating. But for many with sensory issues, eating can be overwhelming, terrifying and can even make them physically sick. Speech pathologist and feeding therapist, Renee Cansdale, explains how to avoid mealtimes becoming a battleground. What causes feeding difficulties and why do they seem to go hand in hand with autism and other neurodevelopmental conditions?
Feeding is one of the most sensory outrageous things you can do! You take substances of many different shapes, sizes, colours, textures, temperatures and flavours. Then you put them in your body, and are expected to experience those sensory properties from within your body, and change them with chewing before swallowing them even further into your body. Children are particularly perceptive 3 0 SO U RCEKI DS .CO M . AU
to their sensory world, so it stands to reason that eating is much more difficult for many. What are some of the physiological reasons kids can struggle to eat?
Other than the sensory challenges with eating, children can have high and/ or narrow palates, dental differences, tongue and lip ties, oro-motor coordination difficulties or oral apraxia (a disorder where a child exhibits difficulty easily coordinating and initiating movement of the jaw, lips, tongue and soft palate. This may impact feeding and/ or speech skills), food intolerances or allergies or gastric motility issues. Often autistic children have a combination of these difficulties and may be diagnosed with Avoidant/restrictive food intake disorder (ARFID). What are common misconceptions about feeding difficulties?
“If children are hungry enough they will eat” is definitely the most common. “Grazing causes feeding difficulties”, “it’s behavioural” - I particularly hate this one as it suggests not eating is about defiance. Feeding is an area that stresses a lot of parents out. And for good reason, because many of our kids also have other health issues and are underweight or lacking in nutrition. So how can parents balance this worry and encourage their child to eat enough of the foods they need?
Unfortunately, we cannot make our children eat. Thus our job becomes giving our children the best opportunities to explore and become familiar with foods, and also help them regulate their sensory world whilst accessing as many essential nutrients as possible. This is where an experienced dietician can help tremendously. Once you are doing all that you can, it’s important to acknowledge
FEEDING THERAPY
BEIGE FOODS
Otherwise known as the chicken nugget diet Take a peek inside the freezer of a neurodiverse household and you will likely see a stockpile of chicken nuggets. People with feeding difficulties often have a limited diet of safe foods they are comfortable with, and it usually involves highlyprocessed beige foods. Staples of their diet are (white) bread, toast, pizza, french fries, sandwiches, cakes, crackers, plain pasta, peanut butter, potatoes, popcorn, cereal, and of course, chicken nuggets. Recent supermarket shortages have caused very real panic among the disability community as even subtle changes like substituting brands can result in refusal to eat. By Rebekah Devlin
Crunchy, highly processed foods are also often easier to process from an oro-motor perspective. It’s why chicken nuggets are so popular - they’re crunchy, beige, not too smelly, and readily available, as well as predictable. Some children might prefer soft foods or purees. This is usually when the food is highly familiar or predictable. An additional appeal of these food could be that they can often be delivered to the mouth quickly via spoon or pouch, and don’t need much skill or time in the oral cavity to process. that ‘you are doing all that you can’ and embrace an unconventional diet. You can Some kids seem to hate food also focus on having a food discovering touching or being mixed. What can culture and routines in your family and I do to help this? building up your child’s confidence, ability Some kids definitely don’t like food to be brave, and flexibility - both generally touching, perhaps because one food can and with food. In 90 per cent of cases, if taint the taste of another. Things like you force foods that your divided plates can be child is not comfortable helpful and also bento If you force foods with, they will go in boxes or zip lock bags in that your child is not these instances. Tongues, theother direction. forks, spoons, toothpicks comfortable with, and corn on the cob Why do some kids they will go in the holders can also be helpful prefer crunchy foods other direction. for reducing the sensory and others prefer soft input of touching a food textures? with fingers. For some children, pouches Crunchy foods are often highly processed are also helpful because they cannot see and therefore extremely consistent and the food and it is delivered straight to the predictable in their presentation and the back of their mouth. See what your child experience of eating. This predictability responds best to, and work from there. is likely what makes them so appealing Spilling foods or drink can also sometimes above soft foods, which are more likely de-rail a great food interaction, so try to to be a variety of temperatures, and have keep things contained at first, then work differences in taste, texture and smell.
towards relaxing these contingencies once your child is comfortable and settled. It is important to remember that many neurotypical and neurodiverse children find mixed textures like casseroles and spaghetti bolognaise really challenging. As parents we see one easy, familiar food but children see a mixture of 'who knows what' tastes and textures and an expectation of eating them all TOGETHER! Involving your children in the preparation and exploration of these foods will help demystify mixed textures. What can I do to help my child start learning about new foods?
Often as parents we can get obsessed with the final goal, which is the child swallowing a certain food. But it’s important to remember that actually swallowing the food is the very last of a series of steps involved. And each step they reach along the way is an achievement. When trying a new food, it can be important to get familiar and comfortable with a food's many sensory properties before tasting it. Some children will have difficulties with even the sight or concept of a food - just as many neurotypical people may have difficulties with the sight or concept of something like a slug or ear wax. This can be a very long process but don’t lose heart or give in to the temptation to pressure or bribe! When children are having fun they will learn and explore, but it will be on their own terms according to their own comfort levels. We can’t expect children to put things into their bodies that they feel revolted by or scared of, however we can support them to manage the sensory properties of foods and be flexible to explore new things. Renee Cansdale is director of Let’s Talk, Let’s Eat, which specialises in Feeding Therapy. She follows many of the strategies from the SOS approach to feeding. More info can be found at sosapproachtofeeding. com/start-here-parents
I SSU E 30 | AU T U M N 2022 31
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FEEDING THERAPY
Helpful steps to get you started Step 1
Choose the right food to encourage: Consider some foods that are similar to the ones that your child already tolerates eg if they like chicken nuggets, try chicken schnitzel and also choose a food to try that is as consistent and familiar as possible.
Step 5
Once it feels ok to have a food around the mouth, you might be able to touch or hold it with the lips, then a lick or three seconds on
Step 2
the tongue.
Present the food away
Step 6
Start at a distance: from your child, then move it closer once tolerated.
Rockets and Spit Cups: Once your child feels comfortable playing
Step 3
Discover the food together: What are its colours, texture, temperature etc?
and exploring with food around their mouth, it’s time to include rocketing (spitting it out with some force while you yell rocket!) into
Step 4
Get closer: If your child feels confident, they may be able to move the food with a utensil, pick it up with their fingers or touch it to their body (on their arm or leg, for instance) or face. It’s important that all exploration is done in a fun and playful manner as we learn most, and will challenge ourselves most, when we are having fun.
the bin and using a spit cup. The spit cup is especially helpful as it will allow your child to taste, bite or crunch a food without pressure to swallow it. From there, multiple chews may be possible and eventually a swallow.
COULD IT BE ARFID? A debilitating eating disorder, ARFID is more than just being picky.
A
voidant/restrictive food intake disorder (ARFID) is a recently defined eating disorder that involves a disturbance in eating, resulting in persistent failure to meet nutritional needs and extreme picky eating. In ARFID, food avoidance or a limited food repertoire can be due to: • Low appetite and lack of interest in eating or food. • Extreme food avoidance based on sensory characteristics of foods e.g. texture, appearance, colour, smell. • Anxiety or concern about consequences of eating, such as fear of choking, nausea, vomiting, constipation, an allergic reaction etc. The disorder may develop in response to a significant negative event such as an episode of choking or food poisoning, followed by the avoidance of an increasing variety of foods. The diagnosis of ARFID requires that difficulties with eating are associated with one or more of the following:
• Significant weight loss (or failure to achieve expected weight gain in children). • Significant nutritional deficiency. The need to rely on a feeding tube or oral nutritional supplements to maintain sufficient nutrition intake. • Interference with social functioning (such as inability to eat with others). The impact on physical and psychological health and degree of malnutrition can be similar to that seen in people with anorexia nervosa. However, people with ARFID do not have excessive concerns about their body weight or shape and the disorder is distinct from anorexia nervosa or bulimia nervosa. Also, while individuals with Autism Spectrum Disorder often have rigid eating behaviours and sensory sensitivities, these do not necessarily lead to the level of impairment required for a diagnosis of avoidant/restrictive food intake disorder. - American Psychiatric Association. I SSU E 30 | AU T U M N 2022 33
Mum of two autistic kids, Briana Blackett explains how she built a team tailor-made for her atypical family.
I
Tailor-made teamwork
’m a child of the 80s. A time of glow socks, bad perms and frogger. For those unfamiliar with that last one - it was truly at the vanguard of gaming. A pixelated frog-like blob trying to cross a road and not get squished by the cars. Fast forward a few decades and I’ve developed a deep affinity with that little robo-frog. As the sole-parent of two autistic boys, it seems much of my time is taken up trying to navigate our way through life’s traffic. Squeezing in endless meetings, therapies and admin - all of which can come at me like fast-moving trucks. If I were to reinvent frogger for the 21st century, I would change it up a little. I’d make it a team sport. That’s because, if I’ve learned one thing as a parent of disabled kids - it’s that success is a group effort. And, for soleparents like me, support workers are the
star players in my frogger squad. Not only have they bought me time to take care of the traffic, they provide a critical extra set of hands for my boys, whose needs can be quite high. The children now have the level of help they need to practice their therapies, develop personal care skills, work on their communication, develop independence (from me!) and meaningfully engage in the wider world. We’ve gone from being an isolated family, struggling to clear life’s hurdles, to a family kicking some goals. However, like many parents, it took me a while to figure out how to find the right support workers - and on top of that, work with them to build an environment in which the boys can thrive. For those of you just starting down this path, here are a few tips that helped me build the perfect team.
STEP 1
Find the right fit
As with any job, you should always interview a prospective support worker to find the right fit. COVID-permitting, invite the candidate over for a chat preferably in the place they’ll be providing the support. WHAT TO DO DURING THE INTERVIEW; Be comprehensive: Outline all of the aspects of the support you require. This includes hours, locations, and duties. Also outline whether the person will be on their own, or working with you, or as part of a team. Be honest: Don’t sugar coat the trickier aspects of the job. If your child is prone to exploding when overwhelmed, be open about it. My kids can be pained by certain
Build a disability support team that suits your family 3 4 SO U RCEKI DS .CO M . AU
I N A S S O C I AT I O N W I T H
noises, triggering fight or flight responses. Many times I’ve sat with one child who’s flailing around on the floor while my support worker chases the other who’s running for the hills. These situations can be very traumatising and some people find them especially confronting. It’s best to have a candidate politely decline the role than be out of their depth when challenges arise. Get real: Provide some real-life scenarios of the kind of support you need. Ask the candidate how they’d respond in certain situations. This not only gives you some insight as to their skillset, it also gives them a chance to decide whether they’re up for the job. I once took the boys on the cable car in the Blue Mountains. It never dawned on me that the support worker would be afraid of heights. The poor thing was silently terrified the whole shift. I felt awful when I found out. Another support worker was really uncomfortable helping my son with his toileting, so we decided to part ways. Now I outline all possible things the boys might be needing support with - from family outings to using a fork. WHAT TO LOOK FOR; Attitude: This is everything. If someone doesn’t think something is possible, then it isn’t. Seek people with no preconceived ideas as to what your children can and can’t do. You can always teach practical skills but you can’t teach people how to have an open mind. Connection: An easy litmus test for me is how easily and quickly the support worker connects with my children. Do they naturally go up and say hello? Do they address them directly or through me? Do they speak about them in front of them? (A big no-no!) Are they comfortable diving head first into our atypical life? If they step back, they don’t get a call back.
Experience: Don’t limit your search to people with ‘on paper’ qualifications. Degrees and certificates are great, but so is the experience of growing up with an autistic sibling or gained on the job. Like pretty much all parents, I’ve no formal qualifications in autism, but after 12 years raising kids on the spectrum, I now consider myself an expert. Experience can come from many sources. STEP 2
Give themstart the best possible
When you’ve found a great support worker, here’s how to give your new team-mate the best possible start; Buddy shifts: Arrange to be there for the first one or two shifts. This way you can show them how you do things and give them a chance to take notes and ask questions. If you require support in a variety of different settings, aim to do buddy shifts in each of those. The Grand Tour: Don’t forget to show your support worker where everything is and how it all works. Point out where the toilets are (you’d be surprised how easy it is to forget to do this), along with the spare keys, the first aid kit and the light switches etc. Tape a list of emergency contacts (including the poisons hotline!) in clear view and point it out to your support worker. All of these things will make it much easier for your new team member to settle in. STEP 3
Upskill and empower
This is where the magic happens. I’ve found the best support workers are the ones brimming with ideas and itching to tackle life’s challenges. When you find these people, here’s how to tap into the talent.
Create a team atmosphere: Keep communication strong and open. Share updates, photos and feedback with your team, and encourage them to share their stories too. Hold team meetings (when your child isn’t there) to discuss issues, strategies and goals. Share your triumphs and fears with your support workers. Let them in on your wildest dreams for your child, and invite them to dream with you. Upskill them: If possible, have your support workers attend planning and therapy sessions. This way, they’ll learn key tools to help your child outside of the clinic. I’ve arranged Q&A sessions with my children’s therapists and their support workers. It’s a great way for them to learn directly from the experts, and quickly become experts themselves. Empower them: Once your team is settled, try not to micromanage them. Give them space to problem solve and encourage them to come up with their own ideas. My support workers have found hidden little parks that are perfect for my highly active but crowd-sensitive kids. They’ve also introduced some great sensory tools, and even rearranged my son’s bedroom to make it easier for him to use. Almost instantly, his self-care skills shot up as he found it easier to independently get ready for the day. #winning For me, there’s no greater feeling than when I see my children hit milestones that were once thought to be beyond reach. And each time this happens - which is more and more these days - I know it’s the result of a team effort. The wonderful culmination of a small group of hand-picked people invested in helping my children lead their best possible lives. Thanks to my tailormade Frogger Squad, we’re not just making it safely across the road we’re boldly venturing out into the world. Briana built her team on Hireup. Learn more at hireup.com.au
I SSU E 30 | AU T U M N 2022 35
How do you select the best Transport Harness?
The situation created by a child escaping their seat is a familiar one. When this happens the danger to that person and others is very real and can prevent the vehicle safety features from working effectively. Transport harnesses provide an essential solution to help avoid this situation and maintain safe travel when required. One of the most frequently asked questions is; “Which harness would be the best for my situation?” There are many things to consider when answering this question. Medifab has compiled a handy guide which gives an overview of the options that are available and provides an honest review of each of the Houdini harnesses on offer. To find out more, read this comprehensive guide at medifab.com.au/harnesses, or reach out to our friendly team on 1300 543 343 or via email solutions@medifab.com.
Stronger Together Purple Day for epilepsy 26 March is Purple Day – global recognition for individuals and families who live with epilepsy.
E
pilepsy is a medical condition that affects the brain and causes seizures. Through ongoing support, advocacy and research by organisations like Epilepsy Action Australia, we are learning more about epilepsy, its causes and treatments.
EPILEPSY: A SNAPSHOT Epilepsy is a disease of the brain characterised by the tendency to have recurrent seizures. Epilepsy can be diagnosed at any age and does not discriminate. Epilepsy can sometimes be caused by head trauma, stroke, infectious disease of the brain, or abnormalities of the brain from birth. Genetics also play a role in some epilepsies, and this is an expanding area of research. About half of the people with epilepsy never know its cause. Seizures and epilepsy can take many 3 8 SO U RCEKI DS .CO M . AU
forms and affect people very differently. Two out of three people with epilepsy become seizure–free with treatment, however, this means one in three continue to have seizures. WHAT IS A SEIZURE? A seizure is a temporary disruption of the electrical activity in the brain. There are many different types of seizures that present in many ways, including changes to sensation, awareness, behaviour or movement. Not all seizures involve convulsions and not all seizures are epilepsy. Sometimes specific events or circumstances can increase the risk of a seizure for someone with epilepsy. These are usually called seizure triggers. Recognising these triggers can help to reduce or even avoid seizures. Some common triggers include lack of sleep, missed medication, fatigue, physical or
emotional stress, hormonal changes and illness. There are many different types of seizures including: tonic clonic seizures, where the body stiffens (tonic phase) followed by general muscle jerking (clonic phase); atonic seizures where all muscle tone is lost for a few seconds; tonic seizures where the body stiffens briefly (atonic and tonic seizures previously known as drop seizures); myoclonic seizures are characterised by brief muscle jerks; absence seizures where the person stares with a brief loss of awareness; and focal seizures which have periods of confusion, disorientation and altered behaviours. HOW IS EPILEPSY DIAGNOSED AND WHAT SHOULD I DO AS A PARENT? Diagnosis is not always straightforward, for many families it can sometimes be a long journey, because seizures tend to happen in an unpredictable, random manner, and are
EPILEPSY
effectiveness for other people with epilepsy only brief, plus there are other conditions is about the same as trying a new antiwhich can mimic seizure symptoms, so it seizure medication, and currently access is usually a process of elimination before a and cost is quite prohibitive. diagnosis is made. It is very hard to capture an event EPILEPSY AND RISK and doctors rarely see their patient have Epilepsy, like other long-term conditions a seizure. Often, a good eyewitness such as Asthma or Diabetes comes with description of the event is quite valuable in certain risks. If left unchecked these can getting an accurate diagnosis. become very serious. Risks associated with If someone is thought to have had a seizures need to be discussed, no matter seizure, it is most likely they will get a what type of epilepsy you have. referral for an EEG and a neurologist Unfortunately, in Australia, there are appointment. Sometimes other tests or approximately 300 epilepsy-related deaths specialists may be booked to rule out each year. They can be other medical conditions, Two out of three attributed to: for example meningitis, • Accidents, drowning cardiac events, fainting people with and injuries that can cause seizures or epilepsy become • Seizure emergencies have symptoms similar to – most seizures stop on seizures. seizure free with their own but occasionally Sometimes, all or many treatment, seizures don’t stop tests for epilepsy can however, this and can become lifereturn normal, even if seizures have occurred. means one in three threatening. This can be called seizure clusters continue to have or status epilepticus and HOW IS IT TREATED? is considered a medical seizures. The first choice of emergency. treatment for epilepsy is • Sudden Unexpected Death in medication. However, one in three people Epilepsy (SUDEP) - this is when a with epilepsy continue to have seizures person with epilepsy dies suddenly and despite treatment. This is often called prematurely and no reason for death is medication or drug resistant epilepsy (also found. known as refractory epilepsy). Other treatment options are usually EPILEPSY ACTION AUSTRALIA considered when medication has failed, if Epilepsy Action Australia (EAA) supports suitable for the person and include: and advocates for individuals with epilepsy Surgery - the seizure focus is removed in people suitable for surgery, mostly the focal every day. EAA represents the interests of people living with epilepsy by advocating epilepsies or if there is a lesion causing the and lobbying Australian Government. epilepsy. This is primarily for improvements for Vagus Nerve Stimulation (VNS) – people with epilepsy in the areas of a pacemaker like device is implanted education, health, employment, transport in the chest and the wires from it are and discrimination. wrapped around the vagus nerve to give intermittent stimulation to reduce seizures RESEARCH and their severity. Whilst there has been a lot of progress Ketogenic Diet or Modified Atkins and many improvements and advances in Diet – dietary management of seizures epilepsy research, genetics, treatments, with high fat diet. technologies and knowledge, there are still Self education and lifestyle changes gaps remaining and many questions to (self-management) are important in be answered. Experts continue to pursue managing seizures. expanding their knowledge in this area Medical cannabis – has proven to and no doubt there are exciting times in help improve seizures in people with the the near future with new approaches on epilepsy syndromes Dravet syndrome the horizon. and Lennox Gastaut syndrome. The
get involved this purple day This Purple Day EAA also celebrates the collective achievements of their organisation, people and community over the past 70 years. They do this with a firm eye on the future, with ambitious aspirations that surpass any plans made before. Bigger, bolder plans to build a brighter future for all Australians and their families living with epilepsy. To facilitate research, to support and to educate in ways that will make a profound difference and to build sustained hope for those Australians impacted. EAA aims to raise $700,000 over the course of 2022 to realise their goals and achieve the previously unattainable. This Purple Day, let’s stand together and help EAA achieve their goals. Whether it be through joining a community fundraiser, hosting your own event, purchasing merchandise, or encouraging your school or community organisation to get involved, every little bit counts. To get involved, visit epilepsy.org. au/fundraise/purple-day/ for further details.
SUPPORT A diagnosis of epilepsy can be life– changing. As a registered NDIS provider EAA can assist with comprehensive needs assessments, development and implementation of seizure management plans, education of support workers, assessment for specific safety epilepsy products and much more. Contact Epilepsy Action Australia on 1300 37 45 37 to speak to a specialist epilepsy nurse, email epilepsy@epilepsy. org.au or visit epilepsy.org.au
I SSU E 30 | AU T U M N 2022 39
EPILEPSY
Riding a quad bike for bilateral therapy Playing with his favourite toys, anything with wheels!
2019 surgery – hanging out with big sister Katrina
Purple Day
What it means to a Hemi Hero and his family
P
urple Day this year finds me reflecting on my family’s epilepsy journey with our son. Mikey, now 10, has had a rare seizure disorder since he was 10 months of age. HHE syndrome, also known as Hemiconvulsion Hemiplegia Epilepsy syndrome, has been a part of his life, and ours, for almost a decade now. HHE syndrome causes refractory epilepsy, meaning that he has drug resistant epilepsy. When we first discovered Mikey had a seizure disorder, it was nothing short of traumatic. We were shocked to discover our son was in the middle of a tonic-clonic seizure. We didn’t know at the time, he was in a “status epilepticus” episode, meaning a prolonged seizure which in many cases, can cause long-term brain damage, and in his case, it did. It was determined that one side of his brain had shrunk and so it was concluded that he had suffered a stroke. However, further tests would reveal that it was not the case. Years went on with our epilepsy dance – seeking opinions from passionate neurologists across Brisbane and Melbourne, even as far as the US. When we met one of these superstars of science, I honestly felt my arms tingle. It was like
4 0 SO U RCEKI DS .CO M . AU
meeting a rockstar! We not only felt heard as parents, but we received a genuine warmth and compassion from these incredible doctors. We were leaving the fate of our young son in their hands. The conversation of brain surgery began when he was two years of age. The type of surgery he needed was a hemispherectomy - a rare surgery where half of the brain is either removed or disconnected from the other half. It’s mostly performed on children who have seizures that don’t respond to medicine. However, we chose not to proceed with surgery at this point. With the support of our doctors, we would watch and observe his development. This 'wait and see' approach can be quite common for families, if they are fortunate to have that option. As time went on and seizures increased, it became clear that Mikey would be a likely candidate for surgery. His first surgery was in 2017, with a follow up surgery in 2019. Mikey has certainly challenged our misconceptions of what we first thought his life might be like. A child functioning with
only half a brain? Is that even possible? People ask us – does he still have seizures and the short answer is “yes”. However, with his ongoing development, and despite the huge obstacles he has faced, he is living his best life. He is currently on medication to help with breakthrough seizures that are largely triggered by stress, lack of sleep and complications of the surgery, such as not being able to regulate his own body temperature. He rides a quad motorbike and is learning how to balance on two wheels. He has friends, he has a social life, he talks about working as a paramedic (or a chef ) one day – he has dreams like other kids, he just has a different way of getting there! This Purple Day, I am grateful for our medical team, family, friends and our community. The strength that comes from a community of incredible families who share this intriguing life because of this one factor we have in common – our kids are “hemi heroes”.
A child functioning with only half a brain? Is that even possible?
By Kelly Wilton
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TELEPRACTICE
Tips FOR
INDIVIDUALS AND FAMILIES
• Preparation is key. Try to have your technology sorted, reduce distractions, and create a personal mental ‘waiting room’ to gather your thoughts before jumping into an online appointment. • Remember everyone is learning. The people you are working with are most likely still figuring it out, so offer ideas and work together to help make it a success.
Tips FOR SERVICE PROVIDERS
OT Phone Home The Transition to Telepractice: Did it work and what next? Associate Professor David Trembath is spearheading a research project to optimise telepractice services.
• Keep it simple and work as a team. Invite the individuals and families to be partners in working out how to tailor it for each person’s needs and preferences. • Be clear in advance about what people need to do to prepare and what to expect. So, when working with parents and children, provide a list of everything they will need and suggest they put it in a box, or on a shelf so it
If there is one good thing that has come out of the pandemic it is the shift to telepractice. At least that is what some individuals with disability, families, and people who provide services are saying - saving time, reducing travel, and being able to connect more flexibly. But has it actually worked? Do people like it, and what might the future hold? Griffith University and Autism Queensland have joined forces to answer these questions. HAS IT WORKED? In general, yes, but not always. In a survey of 103 individuals and families accessing services and 57 staff, more than two thirds said they were ‘satisfied’ or ‘very satisfied’ with online services. However, there have also been some barriers. Some of these we have known about for a long time, such as a lack of computer equipment, poor internet, and finding a private and distraction-free space at home. However, others we are just beginning to understand, such as some people not feeling confident to take
on the roles that telepractice requires. For example, in a face-to-face appointment, occupational therapists often show parents how to encourage their children’s fine motor and play skills while playing with toys, before the parents take a turn and then apply the strategies at home. With telepractice, the same parents may need to jump straight in and try things, albeit with the guidance of the occupational therapist at the other end of the line. DO PEOPLE LIKE IT? Most people said they prefer face-to-face services, but online and hybrid approaches that combine online and face-to-face delivery were close behind. In fact, when we added people’s preferences for onlineonly and hybrid models, they actually exceeded preferences for face-to-face. The vast majority of people said they prefer face-to-face when it comes to building relationships with service providers, as well as helping make “parent friends”. However, hybrid approaches were preferred when it comes to reducing stress, increasing comfort by being in a familiar home environment, accessing services
is ready to go. This avoids rummaging around during an appointment, which some children find very distracting. • Reach out for support. The changes have been quick and online options are growing fast. Create or join a team, who can support you to be inquisitive, creative, and effective in this new way of working.
within a busy schedule, and feeling in control. This suggests that one-size fits all approach is unlikely to be suitable for all people or all services. WHAT DOES THE FUTURE HOLD? A decade of change quite literally happened in days, and we are just starting to understand and embrace the new normal. We can be confident that telepractice is here to stay, but there is still a way to go to make it work best for individuals and families. This research is supported by a Queensland Government Advance Queensland Industry Research Fellowship.
I SSU E 30 | AU T U M N 2022 4 5
In the EYE OF THE STORM What happens, what triggers them and how can we help? In an edited extract from her book Late Bloomer, autistic author Clem Bastow takes us inside a meltdown.
M
eltdowns are perhaps the least understood aspect of autistic behaviour, especially as they manifest in children. To the casual observer, an autistic kid experiencing a meltdown just looks like, well, a kid chucking a tantrum. There is an essential difference. Tantrums are wilful: a behaviour a child will engage in consciously, usually to achieve a desired effect. Meltdowns, on the other hand, will happen even without an ‘audience’, and are an innate reaction to feeling overwhelmed. They may involve crying, yelling, thrashing about or striking out. In autistic people who are minimally verbal or nonspeaking, a meltdown can also be a reaction to the frustration of not being able to accurately communicate their feelings or needs.
SENSORY OVERLOAD AND TRIGGERS When I was little, and undiagnosed, having my hair brushed was a campaign of emotional terror that had to be approached with military precision. The sensation of someone lightly brushing a hand across my skin still feels like I’m being attacked with a vegetable peeler. The sound of people chewing their food makes social dining an act in high-wire terror. Sensory overload – whether courtesy of a clothing tag, scary noises, or 4 6 SO U RCEKI DS .CO M . AU
a weird smell – is often a one-way ticket to a meltdown. The first meltdown I can fully remember is still as clear as day. When I emerged from the maelstrom of emotion that had gripped me senseless, I was lying on the floor of Dimmey’s, near the haberdashery section. My parents were somewhere else in the store, having presumably walked away while I disgraced myself with what must have appeared to be an uncontrollable display of id-fuelled naughtiness. Meltdowns can be thought of as having three stages: the build-up, the explosion
and the recovery. The build-up can be triggered by sensory overload, or sensory overload can be exacerbated by the build-up. There may be obvious signs of increased stress levels, like pacing, fretting, or tense posture or expression, too. The explosion occurs when the person’s ability to regulate their emotions ceases: there may be crying, screaming, thrashing about, self-harm or biting, or fleeing. Finally, during the recovery, language processing may slow down and the person will feel drained, and may experience a sense of confusion or shame. It can take a long time to recover from a meltdown.
MELTDOWNS
"I don’t know what it’s like to be possessed, but I imagine it feels something like a meltdown: a sudden seismic shift that you cannot control."
Clem with her mum, at age 3 and as a baby.
Hot tears shoot out of my eyes. And then ... BANG! It’s every Donald Duck spin-out playing at once on fifty televisions in a locked room. It’s Arnold Schwarzenegger screaming as his eyes pop out of their sockets on the surface of Mars. I have learned to control this, up to a point. I will vacate a room, or alight from the tram, anything to stop myself being crushed beneath that wave of rage, my face dragged across the sandbar by the undertow as I claw desperately for air. If I remove myself from the stimulus, I can avoid the response. Most of the time.
WHAT YOU CAN DO TO ASSIST
Meltdowns continue to occur throughout an autistic person’s life; they may lessen in intensity, stay about the same, or get worse, depending on the person’s circumstances at the time. One thing remains a constant: when a meltdown hits you, there’s not much you can do about it. I don’t know what it’s like to be possessed, but I imagine it feels something like a meltdown: a sudden seismic shift that you cannot control. My throat tightens, like someone is drawing a belt tighter and tighter around my neck. A wellspring of pure rage, or sadness, comes shooting up from my core.
People generally want to know how they can help when a meltdown occurs. And, to be sure, a meltdown (particularly in a teenager or adult) can look really scary! In order to prevent stress leading to build-up, an approach could include helping to provide a sense of routine, or a predictable home, school or office environment: things like schedules and visual timetables (pictures of the things that will happen throughout the day). In the build-up phase, this might include offering a safe and quiet place for the Autistic person to chill out, or recognising things that might be exacerbating sensory input (turning down radios and TVs, not using noisy appliances, offering a weighted blanket or favourite soft toy). During the explosion, a supportive but hands-off approach can work wonders; you could talk to them about their interests, or see if they want to sing a favourite theme song.
The question of what to do if someone has a meltdown in a public space is also concerning to many; acting as ‘crowd control’ is one option – keeping onlookers away, or asking the shop manager (for example) if there’s somewhere quiet the person could go for a while. Looking back, I don’t blame Mum and Dad for walking away from me in that moment in Dimmey’s; they didn’t know it was a meltdown. To them, it would have looked like a tantrum, and the earlyeighties approach to tantrums was to refuse to entertain them. Were I given the choice, I would probably walk away from myself in the midst of a meltdown, too, because on some deep level, I am always aware of the shame that will follow it. Sometimes that shame is immediate and intense, and other times it just lurks at the back of your mind as you piece together the memory of what just happened. There is nothing more embarrassing than coming out the other side of a meltdown, for you have torn off your human costume and revealed your raw and writhing nerves to the world.
Late Bloomer by Clem Bastow published by Hardie Grant Books RRP $34.99 I SSU E 30 | AU T U M N 2022 47
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MELTDOWNS
HOW DOES A MELTDOWN FEEL TO AN 11-YEAR-OLD? Tom Kemp puts it into words.
I
am mentally blind at the time,” says Tom Kemp of his meltdowns. “My brain just kind of explodes and I get so angry. “I start to shake, very slightly, only I can notice it, and my heart is beating a million miles an hour. “I try to keep my voice at the right level and not shout.” But then it all comes flying out. “I say things I don’t mean and I wish that I could take back what I’ve said and done,” he says. Afterwards, comes the self-loathing, despair and remorse. “I know what I’ve done and I feel horrible about myself afterwards, I hate myself, but when they’re happening, I can’t control them,” he says. A sweet and sensitive boy, Tom was diagnosed as autistic, with ADHD and anxiety at age 4. Despite being medicated,he suffers bouts of aggression and rage and has damaged property and had numerous school suspensions. “I used to struggle a lot with loud noises, but now it’s not as bad,” he explains. “I think I hear more noises than other people. There’s so many noises going on that other people don’t seem to notice. “But it becomes like a big fight in my head, with all those noises competing against each other. I just want to tell people to be quiet. “I want to get out of my own head… get out of my brain. And that’s when a meltdown happens.” There are emotional triggers too, such as feeling like he’s being picked on, or unfairly targeted by both kids and adults. “People don’t understand me, they don’t joke the same way with me that they do with others, if I do something, I’m in trouble straight away. Other kids get away
difficult moments as well.” For Katherine, with every meltdown comes growth. “Tom is at an age now where I can talk to him about it and we do, after the fact, we talk about what I could have done differently in my response to him, therefore changing the escalation of his emotions and the outcome,” she says. Katherine says her experience is not unique – and parents of all children with with a lot more than I do,” he says. disability just adapt. “He’s so used to being in trouble,” mum “We’re all thrust into this and none of us Katherine adds. “It really affects his selfhas any knowledge when we start out, but esteem, which is so hard to see as a parent. “I think he does get treated differently to we learn. Although it has been a challenge to parent this other kids, he gets in trouble kind of disability, it is also far more easily and of course “I want to get a gift for our family. My that makes him angry out of my own husband Brad and I have no one likes being treated head… get out had to grow, learn, change, that way.” and search to be better For Katherine, it’s gut of my brain. parents to both our boys, wrenching to see her caring And that’s when therefore making us more and beautiful boy almost a meltdown involved, aware parents. unrecognisable in these “Our approach to moments. happens.” parenting now is certainly “He is a genuinely sweet very different to what it was before. “I kid, and I wish there was more I could think I’ve learnt to parent him a lot better. do to help during meltdowns. The most I am more attuned to him now than I was important thing is to make sure he is safe. before. It’s about understanding how it is He does respond to me, if I remain very for him and listening to him and what he calm and tell him I love him and that he needs.” is not in trouble. It can be tough though, as I am often also trying to deal with his younger brother who is experiencing these By Rebekah Devlin I SSU E 30 | AU T U M N 2022 4 9
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SKILL BUILDING
Home
comforts Therapy doesn’t always need to be done at the clinic. Chances are you have a whole bunch of useful items already in your home says OT Kate Hoad.
O
ccupational Therapy with children generally works on a number of core skills to help them develop independence with everyday things like eating, dressing, writing, cutting, and going to school or out in the community. So what if I told you, taking your child to clinic-based occupational therapy week in and week out is not the only way to see progress? As a therapist, I certainly attest that regular therapy appointments are definitely an important way of learning what skills your child may need to work on at any point in time, and then gather some ideas on how to do this. But what if there were also ways to further strengthen these abilities and skills at home, that required general household items only? Here are some simple ideas to help develop
fine and gross motor skills that you can do with things lying about the house. Remember – the more we practice skills, the quicker we tend to learn them – practice makes progress (not perfect!)
PEGS
Younger Children (Under 6 years) • Create peg zoos and cages for small stuffed toys around the outside of a plastic container. Be creative - you can make patterns or do each side a different colour. • Peg items around the house in a visual scavenger hunt style of activity (think toys, dolls, blinds, towels). •M atch colours, shapes, numbers or even letters drawn on pegs to those drawn around the edge of a piece of paper to work on both pincer strength and visual motor integration skills.
Older Children (7+ years) • Peg races up a pencil using two pegs – placing one directly on top of the other – this works on visual motor integration, bilateral coordination and finger strength. • Use pegs in more functional ways helping Mum and Dad hang out the washing! Using a clothes airer makes this task a bit more child-friendly.
WATER (*AND A FEW OTHER ITEMS)
Spray bottles are great for hand strength.
52 SO U RCEKI DS .CO M . AU
Younger Children • Paint Brushes – kids love to ‘paint’ the house or fence, and practice drawing skills. • Containers and measuring cups– play in the bath or shower at tipping, pouring, measuring to work on hand and arm strength and accuracy of pouring using visual motor integration skills. Older Children Spray Bottles – drawing on concrete, foothpaths, the fence – this is great for
hand strength and endurance. You can work on visual motor integration by getting them to write out sight words. Syringes – Guess how many it would take to fill up a cup, try using one hand and then the other and timing it.
PENCILS, WHITEBOARD MARKERS OR TEXTAS
Younger Children •P utting paper on the wall to draw on with pencils is a fabulous way to get the kids working their shoulders, arms and hand muscles without them thinking it’s work at all. Have them copy you before they draw their own. Lines (vertical and horizontal first, before diagonals), then moving onto spirals, circles, before the final step of more complex shapes like triangles and squares (by school age). Older Children •U sing the shower glass, a window or glass door with whiteboard markers is a brilliant way of getting older kids to work
out the same muscles. Try some more complex tracing at a window or door – get more use from those old colouring-in books and use the pages again to have the kids draw their favourite cartoons or animals. Put the paper on the outside with some BluTac and use whiteboard markers directly on the glass for an ‘easy clean’ experience.
BALLS
Younger Children • Use balloons with younger children to practice catching or batting to keep it in the air, which works on hand-eye coordination. • P ractice throwing or kicking at a target (a piece of paper on the floor or wall). Older Children • G et your child to “walk” the ball using their fingers, up and down their leg. Add in a ‘crossing the midline’ challenge by getting them to go up one leg, across the belly and down the other leg. Any kiddie
They won't even know they are working!
ball works well to start, but you can increase the challenge with a smaller ball (e.g. tennis ball). • S et up a ‘goal’ using outdoor furniture and take turns being the goal keeper or the scorer. Occupational Therapist Kate Hoad is director of Outcomes Therapy. I SSU E 30 | AU T U M N 2022 53
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SENSORY
Could the rainbow mural and alphabet posters splashed everywhere actually be doing more harm than good? Sarah James says sometimes, less is indeed more.
How to make a sensory-friendly environment
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s a teacher and parent, I have seen firsthand how tiring a long day of school can be for our children - especially the little ones in the younger years. There are some things we can do as teachers, carers and parents to help create a sensory−friendly environment for our kids, which will help them thrive, learn and grow. Here are some tips to help you create the ultimate sensory-friendly space.
CREATE A SENSORY CHILL OUT AREA A sensory chill out space is an area where children can go to have a break from stimuli in their environment, such as other people, loud noise or bright lights. A sensory chill out space gives children a quiet space to go, calm down and emotionally regulate. Choose a place where you can see them, but is away from the hustle and bustle of the classroom or home. The chill out space could be a carpeted area or a padded playmat, with soft sensory furnishings such as bean bags, lounger chairs or cushions. To reduce stimulation, this area should not be too bright – can you place blue cellophane over the window or lights, or include a teepee or tent for darkness? Include a couple of quiet activities or things to touch or hold in the chill out space, such as books, a weighted toy to cuddle or some emotions cards to look at.
LET THEM FIDGET Fidgeting is our body’s way of releasing restless energy. Fidget toys are selfregulation tools to help with improving focus, attention and active listening. Some examples include: Sensory Seating – such as a wiggle cushion, wobble stool, sit n gym chair or foot fidget deskerciser. Sensory seating allows kids to readjust and move themselves in a discreet way, using up restless energy and keeping them focused. Hand fidget toys – Your child can quietly rotate a fidget toy in their hand to help stay calm. We love Tangle Jr and Hand Rollers as they are pocket sized and don’t make a noise. Safe Chewing toys – Chewing is a sensory experience and can help children stay calm in stressful or boring situations. A chewable pencil topper or a chew necklace pendant provides a safe chewing option for kids in the classroom.
CONTROL THE AMOUNT OF VISUAL STIMULI IN THE ROOM We know many teachers, parents and kids love decorating their classrooms and play areas. However, some children can be sensitive to visual stimuli and too many brightly coloured posters and charts can be overwhelming. Aim to include a good range of visuals on the walls while also minimising “clutter”.
INCLUDE “BRAIN BREAKS” DURING HIGH CONCENTRATION ACTIVITIES Did you know that some theorists believe a child can only maintain their focus for two minutes per year of their age? That means that a six-year-old can only focus on a task for around 12 minutes! Break up an activity with quick breaks such as: • A two-minute body shake out of different parts of the body • 10 star jumps • A walk around the yard • A “brain food” snack such as raw vegetables and fruit • E ncourage some relaxation time throughout the day
DOWN TIME Giving your kids the opportunity to have some quiet “down time” is important for their mental health and stops them from getting over tired and overwhelmed. Some easy DIY relaxation activities you can do at home or in the classroom include: some yoga stretches on the mat, a nature walk outside, a mindful colouring in activity, or some deep breathing exercises. Sarah is a qualified psychology teacher, mother of two boys and owner of The Sensory Specialist (thesensoryspecialist.com.au). I SSU E 30 | AU T U M N 2022 57
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Sometimes it can feel like all we do is ferry our kids from one appointment to the next… and it is exhausting. Vicki Elisara shares her tips for feeling more under control, even when things are out of control.
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hen my eldest daughter left hospital, we were thrown into the world of appointments – specialists, doctors and therapists. There were several per week and each came with a mountain of paperwork, worry and more things to do. It was a lot. Exhausting, overwhelming and there was so much to learn. When you have so many appointments it can feel like you are the only one living this life and it can be very lonely. Often it feels like no one understands what your days are like. Friends and family might hear you have an appointment with your specialist and think that’s about half an hour and wonder what you did for the rest of your day. But appointment days can be long, draining, and stressful. It’s hard watching someone you love have procedures they don’t fully understand or don’t want to do. You put on a brave face and hold it all in to support your loved one, even though you might be feeling very stressed yourself. There is a lot to navigate – referrals, appointment times, therapy waitlists, tests, surgeries, paperwork, Medicare claims, NDIS, health funds and lots and lots of waiting. Over the years the number of appointments we attend has lessened, but each appointment usually still comes with things to do and prepare to get the most from these visits. I have found that thinking about the professionals you see as part of a great team you are creating really helps. You want the best possible team and each one has an important part to play. Players may change over time when one retires or leaves, but a new person can bring a new perspective and skills and that’s a positive.
You can help to make your appointment days a little smoother by thinking about past appointments – what worked and what didn’t. You can’t plan for everything, but by making minor changes and extra preparation, your day could become a bit easier. SOME COMMON PROBLEMS Do you arrive at your appointment and rather than focusing on supporting your loved one, you spend your time filling in forms? At the time of making your appointment, request forms to be emailed to you to fill in at a more convenient time. Do you find the waiting rooms stressful? Prepare a small bag with interesting things only for appointment days. Call when you arrive and find out how long the wait is. Maybe waiting outside is easier for you or go for a short walk nearby if there is going to be a long wait. At the end of a busy appointment day be kind to yourself and the special person you are supporting. Create a calm and relaxing evening so you can both unwind and recharge. You can find more handy tips by heading to mymedicalorganiser.com.au or following their socials.
GIVEAWAY: My Medical Organiser is giving away a Sage Green My Medical Organiser and a handy tote with their signature design. This pack is valued at $95. Enter at sourcekids.com.au
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2022
M E L B O U R N E
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CUSTOMIZABLE FOR ALL AGES zPods are a customisable, sensory friendly, sleeping pod jam-packed with features such as intelligent lighting control, white noise generation, room temperature control, an innovative air filter and more. We believe that zPods is not just a concept for children individually, but a concept that can be life changing for the whole family. We want to create a safe space in an environment that becomes a constant variable which can change the world of sleeping.
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N e e d s
NEWS
Invisible NO MORE Autism Spectrum Australia (Aspect) is leading the introduction of The Hidden Disability Lanyard in Australia.
They’ve caused many a fight in many a household, but video games may just be the next big thing in cerebral palsy therapies. The Better Together conference held recently in Melbourne heard gaming interventions for cerebral visual impairments are currently
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id you know that one in five Australians have a disability? And that 80-90 per cent of these disabilities are ‘invisible’, meaning that people can’t tell someone has a disability by looking at them? For a person with a hidden disability, it can be challenging to get support, complete everyday tasks or access public environments and events. This is mostly because of challenges in the environment (such as loud noises, bright lights or crowds), processes (such as complicated check-ins or queues), and a lack of awareness and understanding in others. The Hidden Disability Sunflower Lanyard is an easily recognisable symbol that indicates to people around you that you might need a bit of extra time, support and understanding. Organisations use the Sunflower icon to help people with a hidden disability to become more visible, so they can adjust some of the environment or processes around you, to make you feel more welcome. The Hidden Disability Sunflower Lanyard started at Royal Gatwick Airport in London and has since spread across the globe. Autism Spectrum Australia (Aspect) is leading the introduction of this exciting initiative in Australia. The Hidden Disability Sunflower will soon be recognised at all major Australian airports, as well as an ever-growing list of other organisations across the country including Transport NSW, Yarra Trams, Melbourne Cricket
Gaming intervention for cerebral palsy
being utilised to improve functional vision for children with disability. Eyelander is a free to play browser game developed in the UK (eyelander.co.uk). It was designed with, and for, young people with brain-related vision difficulties to develop strategies to help search for objects or images. The iVision project has developed four mini-games aiming to train visual perception (such as object recognition, figure-ground perception, visual spatial perception)
Ground and Sydney Gay and Lesbian Mardi Gras. These organisations will also act as distributors for the lanyards, for instance, the Sydney Royal Easter Show will have them available in its Quiet Room, while Transport NSW and Yarra Trams will have them at key stations and locations. While the Hidden Disability Sunflower brings necessary awareness, there is still more that organisations can do to reduce and remove barriers for people with hidden disabilities. Aspect’s Autism Friendly team partners with organisations to make environmental adaptations; develop helpful resources, provide staff training on autism, other hidden disabilities and recognising the sunflower lanyard as well as developing inclusive events and initiatives.
in children with cerebral visual impairment. CatchMe! and HelpMe! gives the user the ability to see and touch an object while performing decisionmaking and basic problem-solving. Bryce Johnson, co-inventor of the Xbox Adaptive Controller, was a presenter at the conference, highlighting his journey from when Microsoft first released the controller in 2018. The Better Together conference, which was hosted by AusACPDM (Australasian Academy of Cerebral Palsy and Developmental Medicine) and IAACD (International Alliance of Academies of Childhood Disability), explored a variety of topics, including recent developments in CP research. *More coverage of the conference will be featured in our Winter edition of the magazine.
For more info about the Hidden Disability Sunflower lanyard, head to hiddendisabilitiesshop.com.au or autismspectrum.org.au
By Kelly Wilton
I SSU E 30 | AU T U M N 2022 61
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SHOPPING
Adaptive
eating
Mealtimes can be a struggle, for a variety of reasons. But thankfully, there are lots of products to help assist our children to become independent eaters and some may even be NDISclaimable. Here are our picks to whet their appetites.
RE-PLAY DIVIDED TRAY Perfect for those who don’t like food touching. The larger size plates with deep sides are ideal for older kids who need bigger portions. Made from durable hardy plastic, they are dishwasher safe and can survive falls from the table. They also come in RePlay’s rainbow of colour choices. RRP $8.95 feedgrowplay.com.au
P L AT E G U A R D S Plate guards, or a plate surround, attach to a standard plate to prevent food from falling off. They are great for kids who lack mobility or dexterity to be able to use two utensils. The guard also acts as a helpful surface to assist in getting food onto a spoon or fork. POA aidacare.com.au
C U T S F O O D A N D N OT F I N G E R S KiddiKutters have been designed to keep fingers safe whilst cutting and preparing a variety of foods. With a rounded serration, they can be used with a sawing action to cut up a variety of foods, including meat. KiddiKutters are perfect for all ages as come in eight funky colours. RRP from $17.99 kiddikutter.com.au
S U C T I O N PA D S A N D B O W L S This non-slip, suction base is designed to tightly secure any plate, bowl or cup to the table. Designed to fit just about any dish with a flat surface, they can turn your child’s favourite plate, bowl or cup into a non-slip success. RRP from $9.95 boboandboo.com.au
GET DIGGING FOR (GOLD) NUGGETS FLEXI CUP Flexi cups are made from flexible plastic which allows the user to easily drink from a cup without requiring neck extension. Top rack dishwasher safe. RRP from $3.95 thetherapystore.com.au
Who says you can’t play with your food? A fun way for your child to develop their fine motor skills and master the mechanics of using cutlery. With ramps, sections and grooves to learn on, your child can build their way to better eating habits. Both the Garden Fairy and Digger plates are dishwasher and microwave safe. RRP from $56.90 boutiquebaby.com.au
I SSU E 30 | AU T U M N 2022 63
TRAVEL
A taste for travel:
OPTIONS FOR YOUNG ADULTS As our borders start to open up, there are some great options for young adults who are keen to get out and start exploring. Supported travel groups provide many benefits including boosting people’s sense of self, independence and forming friendships with like-minded peers.
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TRAVEL WITH TRAVENGERS The team at Travengers assists young autistic people and those with hidden disabilities to travel around Australia in a supported and fun group environment. Catering for those aged 15-35, the trips include destinations like Byron Bay, Port Stephens and the Great Ocean Road. The tours are ideal for those who want to embrace new experiences, build their social network and gain independence, surrounded by an engaged and supportive team. However, if you feel travel is a bit tricky at present, you can still satisfy the travel bug and make friends by joining Travengers’ Virtual Travel Group online. You’ll visit a new destination each week, learning about culture, activities and more through a fun and interactive space. Social inperson meet-ups are also held in Sydney. travengers.com.au insta-travengers.au
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SHORT TERM ACCOMMODATION Short Term Accommodations, also known as STAs - are a perfect introduction to travel. An STA is usually a minimum of 1-3 nights within a shared space, such as an apartment, with a group of other young people, all with the assistance of caring support workers. An STA adventure could be a great first step to explore a new place, as many STAs are local to the area in which you live. STA options also give you the time to enjoy a break from routine at a different location and work on independent living skills.
EVERYBODY NEEDS A BREAK SOMETIMES! Short-Term Accommodation (STA) is a way of providing respite care that allows both you and your carer to have a break or a change of scenery. • Residential respite is now called ‘ShortTerm Accommodation and Assistance’ under the NDIS. • The amount of STA funding you can receive depends on the level of support required.
3.
BLINDSQUARE – VISUAL IMPAIRMENT TRAVEL APP Researching accessible travel within Australia is becoming easier thanks to a variety of sites dedicated to keen travellers. BlindSquare has been developed to assist people who are blind, deaf blind and partially sighted. It is the world’s most widely used accessible GPS-app, paired with third-party navigation apps. BlindSquare’s self-voicing app delivers detailed points of interest and intersections for safe and reliable travel, in a variety of languages. blindsquare.com
By Kelly Wilton
SPORT
Adelaide, SA / THE ICE ARENA Snow play sessions (which run during school terms) are a great introduction to ice skating as well as a fantastic sensory experience. The sessions are ideal for learning to be at ease with the snow, and include fun games, obstacles and props. The Ice Arena also has wheelchair ice skating in public sessions. theicearena.com.au
Perth, WA / COCKBURN ICE ARENA has
ICE ICE BABY
With the recent Beijing Winter Olympics and Paralympics, our kids may be keen to emulate their heroes and hit the slopes and ice themselves.
W
e might live in one of the world’s driest climates, however that doesn’t mean we can’t enjoy the thrill of ice skating. There are some fantastic options around the country with a range of adaptive equipment, catering to the diverse needs of our children.
Skating Aids Regular frames or a fun Penguin are perfect for kids who are new to the ice, unsteady on their feet or require assistance with balance, as the design gives stability to the skater. Seals are used for when seated skating is preferred and the child has adequate core strength to balance. A parent pushes the skater to glide across the ice, ensuring stability. Ice Gliders allow individuals in
an all abilities session that runs throughout the school term. Accessible options include skating aids such as penguins, seals and regular frames. They also have an ice glider so skaters can enjoy the sensation of gliding on ice whilst in their wheelchair. A custom ice chair is also available on request. The ice chair is similar to a beach chair but adapted to ice. cockburnicearena.com.au
Melbourne, VIC / O’BRIEN ICEHOUSE is right in the heart of Docklands in Melbourne. Wheelchair ice-skating is available in public sessions. The O’Brien Icehouse Hockey Academy runs development camps in April, July, September and January holiday periods. During selected holiday periods, the Hockey Academy collaborates with G.E.T (Global Edge
wheelchairs to experience the gliding sensation of ice skating (check each ice glider for individual accommodations for chair sizes). Custom Ice Chairs (as featured) was built by TADWA (Technology for Ageing and Disability WA). The Ice Chair features studded tyres and independent left and right brakes to aid steering, allowing the skater total freedom, as another skater pushes to allow the sensation of gliding on the ice.
Training) to conduct both minor, senior and para ice hockey training camps. obrienicehouse.com.au
Brisbane, QLD / ICE WORLD has an Olympic sized rink for plenty of fun-filled laps and has a skate school as well as a hockey program for any age from 5 to 80! A designated wheelchair session runs during school terms or there’s always curling on a Wednesday night. iceworld.com.au
Sydney, NSW
/ ICE ZOO SYDNEY offers a
world of fun on ice, all close to the Sydney CBD. Wheelchair users can skate during general
Sports
public sessions or perhaps you’d like to dance
Para ice hockey is modified for players, so instead of skates, players sit on double-blade sledges that allow the puck to pass beneath. Players use two sticks, which have a spike-end for pushing and a blade-end for shooting. Curling is where two teams take it in turns to slide stones made of granite towards a target – known as a House. It is closely related to bowls or boules. Wheelchair curling is an adaptation of the game for people with disability affecting the lower part of their body.
aids are available.Children under 15 can also
at the Ice Zoo’s ‘Disco on Ice’? Penguin skating train with the Ice Zoo Hockey Club, however basic skating skills are required. icezoo.com
Hobart, TAS
/ ICE SKATING TASMANIA
offers several activities for wannabe skaters, including a snow play sensory experience, and ‘on ice’ games such as hockey. Penguin skating aids are available, as well as seals, skate frames and kangaroos. Wheelchairs users can also skate during the public sessions. iceskatingtasmania.com.au
By Kelly Wilton
I SSU E 30 | AU T U M N 2022 6 5
Looking SMIK! Beau is unstoppable in his new wheels, exploring the farm, trails and even the coast.
F
rom the backyard to the beach and across paddocks on the farm, Beau Hodder is not limited by his disability thanks to the care and commitment of his family. Those qualities are also at the forefront of the business that has ensured Beau gets where he wants to go in a safe and secure manner. The Hunter Valley seven-year-old has cerebral palsy and is reliant on a wheelchair. But far from constrained by it, Beau is benefiting from his custom-made Dejay SMIK wheelchair. For 35 years, Dejay Medical has been specialising in assistive technology for children and adults, with a range of wheelchairs - all handmade in the business’ Sydney workshop - as well as walking and standing solutions, paediatric seating and tricycles, including its renowned frame running bikes. Beau’s family was first introduced to the team at Dejay when Beau turned three and had outgrown his special needs stroller. Mum, Emma, says the experience of working with Dejay to enhance Beau’s lifestyle has been faultless. “Getting a wheelchair can be overwhelming for a family, but for us it just opened up the activities we could do and helped Beau’s world become more accessible, as we couldn’t continue to carry him everywhere,” Emma explains. “We trialed lots of wheelchairs but
6 6 SO U RCEKI DS .CO M . AU
decided on the SMIK Buzz because it was compact and we could easily lift it in and out of our car. It also folded up and collapsed, which was a bonus for us when we were going away and needed to pack the car to the brim. “We were also lucky enough to get Dejay to build us a custom third wheel which made the Buzz even more accessible. It lifted the front castors off the ground and made it possible for us to take to the farms where my husband Jarrod and I both grew up, to visit family. “The Buzz also gave Beau the chance to have an opportunity to learn to self propel – which he never mastered but we wanted to try.” Steve from Dejay remembers first meeting Beau, when the family lived in the ACT and wanted a chair to utilise the trails around their home. "The SMIK wheelchair was developed back when there were limited solutions available for families,” Steve says. “Each chair is custom-made to suit the needs of each family. They are robust to handle the rigours of young children who can be hard on their equipment. “A free trial at home helped us to design and build a solution to meet Beau’s needs.” Beau has now grown into a SMIK Joey which has pneumatic wheels and off-road tyres, allowing the family - including sister Tilly and dog Ted - to explore the coast close to their home.
ADVERTORIAL
“Beau loves the beach and is a bit of a dare devil. He loves his dad taking him into the big waves,” Emma says. Seeing the happy faces of customers like Beau living life to the full is what inspires the Dejay team at Dejay offices in Sydney, Melbourne and Brisbane. “We have had long relationships with many of our clients,” Steve explains. “We have watched them grow up and explore the world and share their memories with us. We do what we do because we love what we do.” It’s apparent that Dejay’s passion and professionalism is respected by their clients, with the Hodder family impressed by their efficient service. “We love working with Dejay. They make the SMIK’s in their warehouse in Sydney which reduces the wait time for Beau to get new equipment,” Emma says. “This was a big factor for us given the current wait times for other equipment since the pandemic. “We love our SMIK and would definitely recommend the chair. “We have found Dejay amazing to work with. Beau’s first chair lasted the whole three years he had it – it was hardy and never broke or needed anything replaced on it. It lasted so well we actually donated it to a little person who needed it after Beau via Ben, our rep from Dejay.” For more infomation see dejay.com.au or contact 0425 255 545 or email therapy@dejay.com.au By Rachel Williams
we can get you rolling with the world's leading brands Helping you achieve your goals for over 35 years
www.dejay.com.au
02 9838 8869
therapy@dejay.com.au I SSU E 30 | AU T U M N 2022 67
Seating and Positioning Aids KEY
T
Toddlers
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Children
Y
Youth
A
Adults
Adaptive seating and positioning systems to provide support. SPEC I AL TOMATO SOFT TOUCH SITTERS • Up to 91kg // Up to 185cm
C Y A
• A n adaptive seating system in 3 variations - Sitter Only; Sitter with Floor Wedge (1 - 3) and Sitter with Mobile Base. • A ll of the sitters come with attachment straps. • C an be securely attached to a stable dining chair, classroom chair, stroller or any of the Special Tomato Bases. The Special Tomato Sitters are intended for children with mild to moderate positioning needs. dejay.com.au
C Y A
SPEC I AL TOMATO H I L O M U LT I POSIT IONING SE AT • Up to 59kg // Up to 160cm. • C an be customised to suit each individual and has built-in growth adaptability.
T
RIFTON ACTIVITY CHAIR
C
• Up to 108kg // 32cm to 61cm. • S eat and back padding including adjustable back and seat belt. • Base with Tilt-in-Space (manual). • Armrests and short adjustable legs. The Rifton Activity Chair is considered by many to be the ultimate clinical positioning chair that has revolutionised active indoor seating. activerehab.com.au, astris-pme.com.au
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• Choices of seat cushions featuring Special Tomato’s soft-touch material, durable and tough. • Features Tilt-in-Space – whilst in the seat, floor to table height and simple, tool-free adjustments. This seating system is uniquely designed with cushion technology made from latex free material that is peel and tear resistant. dejay.com.au
PRODUCT REVIEW
M A D I T A-F U N T H E R A P Y C H A I R
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PROTAC SENSCIRCLE M U LT I P I L L O W
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T
Y
C
• Up to 50kg // 42 to 63cm. • S eat surface can be individually adjusted.
A
• T he headrest can be adjusted in
• All ages.
height, depth and angle.
• Mouldable and flexible with nine parts.
• T horax pelotte pads encourage stable
It can be used for conflict resolution,
and upright sitting positions.
as its soothing and sense-stimulating
Madita-fun therapy chair has unique
effect alleviates unrest, anxiety and
features that make it one of the most
stress.
desirable seating systems around.
• Flexible positioning, you can wrap
astris-pme.com.au
yourself up and shield yourself from the outside world. • W ith its shape and colour, Protac SensCircle® promotes rest, sleep and de-stress. You can sleep with it or on top of it. You can fold it into a chair or a little
L E C K E Y PA L
C
• 3 – 12 years // Up to 50kgs.
Y
A comforting multifunctional cushion
• Mild to moderate postural support.
for activity, relaxation, rest, and proper
A
• Range of base options.
positioning.
• Combination of supports available.
avantinnovations.com.au
The Pal is a classroom chair designed for
"cave", or use it as a backrest in bed.
children with mild to moderate postural needs. Coming with a range of accessories and options, it offers increased stability to help reduce fatigue and allow children to concentrate on learning for longer periods. astris-pme.com.au, sunrisemedical.com.au
C Y A
S M A RT S E A T P R O SPEC I AL I SED SE AT ING • Up to 160kg // 16.3cm to 29.1cm. • Tilt-In-Space and back rest recline.
T C
SMILL A SE AT ING SYSTEM
• Easy- adjust leg rest angle. • Sprung suspension absorbs vibrations and ensures a good riding pleasure without compromising steering.
• Up to 108kg // 32cm to 61cm.
SmartSeat Pro is the ultimate in
• B ackrest can be adjusted in
specialist seating where postural
height and angle.
alignment and control is needed
• Headrest supports head control.
in the “easy chair’ format,
• A rmrests can be adjusted in height.
fully adjustable to encourage a
Smilla is a unique indoor seating system
symmetrical and mid-line position
that can be adapted to suit individual
and pressure relief.
needs and requirements.
astris-pme.com.au
astris-pme.com.au
I SSU E 30 | AU T U M N 2022 6 9
C
LECKEY SQUIGGLE S SE AT
T
JENX ATOM
C
• 6 months to 5 years. • Max user weight 25kg. • Modern, child-centred
• 1 to 5 years // Up to 22kg.
styling combined with
• Grow with you.
a comprehensive range
• W ide range of accessories
of support options - for
and options.
moderate to complex
• Has a high low base, and tilt.
postural needs.
The Squiggles is perfectly
• Tool free adjustments.
designed to meet the unique
• High and low base option,
needs of young children. With
wipe clean.
a large range of accessories
The Jenx Atom has a wide
and options the squiggles
range of accessories to
can be customised to suit
customise it to each child’s
your needs however basic
needs. Great for many indoor
or complex. gtk.com.au,
activities like feeding, play and
sunrisemedical.com.au
learning. medifab.com.au
R82 WOMBAT L IVING
R82 SC ALLOP • 2years + // Up to 70kgs // 50cm to 180cm.
• Up to 18 years // Up to 70kgs // 35 to 185cm.
• Versatile - Scallop can be used for long
• T ilt-in-Space - seat unit tilts from -15°
sitting and can also be attached to a wide
to 20° to accommodate both relaxed and
variety of chairs.
active sitting postures. Depending on the level of function, some users will be able
• Removable cushion. The Scallop
to activate the handle beneath the seat
cushions come in two reversible colours
themselves.
and can be easily removed from the
• Built-in growth - Wombat Living offers
shells and machine-washed.
stepless adjustment for growth.
• P ortable. Weighing less than 2kg - easy to travel with. The Scallop is designed to aid in floor sitting and to add extra support whilst sitting on a chair. etac.com
• A ngle adjustable push brace. Depending on
C
the need, the push brace can be angled into
Y
the desired position.
A
The Wombat Living is a cool activity chair for all children, from toddlers to teenagers. The fresh look with modern colours makes it suitable for use in any indoor environment. etac.com C Y A
SPEC I AL TOMATO C ATCHUP CHAIR • Up to 113kg // Up to 170cm. • A perfect fit seat at a perfect fit height. • A ppropriate for individuals who are requiring mild to moderate postural support in sitting. • P erfect for multiple user environments with tool free calibrated adjustments. Maintaining good posture equals less fatigue for children, so they can direct their attention to learning, eating, creating and socialising. dejay.com.au
70 SO U RCEKI DS .CO M . AU
C Y A
PRODUCT REVIEW
C Y A
SPEC I AL TOMATO OUT AND ABOUT SE AT • Up to 41kg // Up to 160cm. • Easy wipe clean and machine washable base fabric and fabric pad. • 3 -point padded adjustable pelvic harness to maintain proper position of the pelvis and hips. • Completely portable with backpack straps for handsfree transport. Provides comfortable upper body support using a padded, adjustable 8-point harness system and height adjustable headrest. Can be fitted to most chairs. dejay.com.au
Y A
R 8 2 PA N DA F U T U R A 5 • Up to 85kg // 130cm to 200cm. • A ngle adjustable back. Activate the handle on the back to carry out a smooth and stepless angle
COMES IN HOT PINK TOO!
adjustment of the back. • Easy change - active to standard. Mount separate side plates and cushions and the seat is easily transformed into the standard model. • Comfortable cushions, carefully moulded to achieve optimum comfort when seated. The Panda Futura size 5 is a comfortable supportive seat for larger children and teenagers. Available in two versions; Standard and Active – providing required comfort, support and freedom of movement. etac.com
C
SNOOZA CHAIR • 6 months + • T he soft snug close support helps the occupant to relax and high armrests promote better breathing. • Well placed carry handles make transportation easy and large storage pockets are located on each side. • Cleaning the Snooza chair is easy – just wipe down the medical grade vinyl cover. The centre comfort wrap supplied is removable and washable. The Snooza Chair uses gravity to keep the occupant safe with good postural stability while out of their wheelchair. permobil.com
T C
JENX CORNER SE AT • 6 months to 10 years. • 25kg to 55kg // 31.5cm to 68cm. • Adjustable height back (with or without upper back support). • Abduction block. • Corner shape helps to maintain your child in mid-line. The Jenx Corner Seat is an ideal first seat for any child. It offers support in long sitting, which is a child’s usual first sitting position. astris-pme.com.au, medifab.com.au
I SSU E 30 | AU T U M N 2022 71
Watches Reads
&
Books and shows on our radar right now…
SAM’S BEST SHOT This is a father and son story like no other. After selling their house to finance the trip, Dr James Best
T U R N I N G R E D – G RO W I N G U P I S A B E A S T !
takes his teenage autistic son,
Turning Red tells the story of Mei, a 13-year-old girl who turns
to help him grow emotionally
into a giant red panda whenever she loses her cool. The
and conversationally. And the
beauty of this film, without giving too much away, is that the
results are extraordinary. There
people who truly know and love you, will always be able to see
is also an Australian Story episode
the real you. A wonderful family movie which reminds us that
dedicated to their incredible
growing up is hard at times, and we all have a red panda inside
and transformative adventure.
of us! Streaming on Disney+
booktopia.com.au
Sam, on a six-month trip to Africa
ALL KIDS LOVE TO PLAY
Large bodysuits to assist everyday living
NEWM SWI
Accelerate Learning with Intensive Physiotherapy
EXPERIENCED PAEDIATRIC PHYSIOTHERAPISTS FUN-FOCUSED & MOTIVATING
• unisex onesies to help keep wandering hands out of nappies & pants • deters inappropriate undressing & other challenging behaviour • range includes back-zips & tummy access styles for tube feeding • available in sizes for kids & adults (great for aged care) • soft fabric & tag-free to minimise irriation
www.wonsie.com.au
72 SO U RCEKI DS .CO M . AU
Registered NDIS Provider
DAILY FOR 2 WEEKS
Contact us at (03) 9372 0536 or admin@paediatricphysiotherapycentre.com 9 Moore Street, Moonee Ponds VIC 3031
paediatricphysiotherapycentre.com
WATCH & READ
ROCKSTAR DETECTIVES By Adam Hills If you are a fan of Spick and Specks, then the first children’s book from Adam Hills, Rockstar Detectives, is sure to tickle your funny bone. When a priceless painting goes missing, Charley - a 12-year-old viral singing sensation - and her best friend George - camera whizz and budding comedian - are shocked to discover they’re the prime suspects. Together they must solve the mystery and prove their innocence. booktopia.com.au
10 STEPS TO REDUCING YOUR CHILD’S ANXIETY ON THE AUTISM SPECTRUM
WONDERFUL WISHES By Kelly Louise jarris
This book is designed to help parents
From rubber cars to cake-
support their autistic children aged 4-8 with
eating dinosaurs, this
emotional regulation and decrease their
delightful tale is designed to
anxiety. It is intended to be used with the
take little imaginations on an
activity book Having Fun with Feelings on the
entertaining journey before
Autism Spectrum. These stages help parents
bedtime. Available in Kindle
understand the causes of anxiety and provide
and paper back on Amazon.
practical strategies for creating a toolbox to
com.au and pre-order
reduce anxiety. attwoodandgarnettevents.com
through kljbooks.com
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I SSU E 30 | AU T U M N 2022 73
NSW / ACT
QLD
kindi
Give your young child the very best start in life At Autism Queensland we understand the specific needs of young children on the spectrum and recognise parents as crucial members of the team who will help your child on the autism spectrum achieve success. EarlyAQtion Kindi supports children up to school entry age to develop skills for successful participation in home and community. One, two and three day groups available.
We teach your child meaningful and useful skillls, use their strengths and interests to motivate learning, and take a positive approach to behaviour support.
Enquire today about enrolling your child, NDIS funding, and other EarlyAQtion services. E: css@autismqld.com.au
Available in: Brisbane (Sunnybank Hills & Brighton) Gladstone Rockhampton Mackay Cairns
Participation Opportunity Choice autismqld.com.au
QLD
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I SSU E 29 | SU M M ER 2021 77
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Build a disability Build a disability support team that support team that suits your family suits your family
“One of Max’s favourite things to do is to get out of the house and just explore the world. He’ll go on a bike ride, fortoa do walk “One of Max’s favourite things is to in the park, or cash in and his cans for pocket get out of the house just explore the money. But, go being world. He’ll on a teenager, bike ride, he for doesn’t a walk really want his mum hanging around, in the park, or cash in his cans for pocket helping these things. money. him But,do being a teenager, he doesn’t really want his mum hanging around, Having our team is absolutely helpingBonnie him doon these things. crucial for Max at this stage in his life. She’s there to help him team navigate the world Having Bonnie on our is absolutely as he seeks to be independent crucial for Max at more this stage in his life. in it. If there there to arehelp sensory issues, the world She’s him navigate as he seeks to be more independent in it. If there are sensory issues,
Bonnie steps in to help him regulate. And when he struggles to communicate, she’s there to help myinnon-verbal express Bonnie steps to help himson regulate. And himself, always careful to speak over when he struggles to not communicate, she’s orthere for him. to help my non-verbal son express himself, always careful not to speak over The trust and friendship between the pair or for him. is magical. It’s also key to his growing confidence and friendship independence – twothe pair The trust and between things every It’s parent child as is magical. alsowants key tofor histheir growing they head toward adulthood.” confidence and independence – two things every parent wants for their child as —they Max’s mum head toward adulthood.”
— Max’s mum
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