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FREE AUTUMN 2015 TUBEROUS SCLEROSIS Sophie’s Story Your guide to RESPITE NDIS update Deon Kenzie breaking records TWICE exceptional

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Page 1: Source Kids Autumn Issue May 2015

Issue 1 April 2014FREEAUTUMN 2015

TUBEROUS SCLEROSIS Sophie’s Story

Your guide to RESPITENDIS update

Deon Kenzie breaking records

TWICE exceptional

Page 2: Source Kids Autumn Issue May 2015

2 AUTUMN 2015

Get all of the latest information and updates from Source Kids

Get Social connect online with us

DOWNLOAD the latest Source Kids issue for free at issuu.com/sourcekids.

SUBSCRIBE to receive all four issues delivered direct to your door for just $55 per year – see page 6 for details.

READ OUR eNEWS by subscribing for FREE at www.sourcekids.com.au to receive fortnightly updates with the latest news, blogs and competitions direct to your inbox.

Page 3: Source Kids Autumn Issue May 2015

AUTUMN 2015 3

46

What’s on calendar

48

Directory

50

Websites, blogs and social pages we love

51

App review

26

Allergies and intolerances

30

International Angelman Syndrome Day

32

Deon Kenzie – running for records

34

NDIS and the latest

38

Physically managing older children

40

Twice exceptional

Get all of the latest information and updates from Source Kids

Features

8

8 top tips – how to negotiate your child’s IEP

9

Next generation genetics for the next generation

10

The ins and outs of respite

19

Steve Waugh Foundation

20

Tuberous Sclerosis and Sophie’s story

CONTENTSRegulars

2

Welcome

5

We love

14

Product review - paediatric wheelchairs

24

Product feature – gross motor skills

36

Family profile – the Woolsey family

45

Book review – Asperger Syndrome in the classroom

Page 4: Source Kids Autumn Issue May 2015

4 AUTUMN 2015

EditorialEditor Marie-Louise WillisWriters: Rachel Williams and Marie-Louise WillisContributors: Dr David Coman, Zalia Powell, Melissa Locke, Debbie Evans, Hannah Smith, Kathy Hoopman, Jenny Woolsey, Clare Stuart and Michael Young.

Advertising Advertising Sales Shane Hill

Graphic design Karen Anderson

Publisher Emma Price

Source KidsMarketing CoPO Box 5279, Launceston TAS 7250Phone: 03 6327 1995ABN: 66 434 598 812Web: www.sourcekids.com.au

Send all letters and submissions to:Source Kids, PO Box 5279, Launceston TAS 7250 or email [email protected] Editorial enquiries: 03 6327 1995

There is excitement building as we look at the year that will be 2015! I for one

always get excited about a new year, new goals and new ways of doing things. In

the spirit of all things new, Source Kids will be bringing you some exciting changes

this year and we can’t wait to reveal them to you during the year.

Firstly, due to popular demand we will be offering a subscription service to our

readers to have all four issues of Source Kids delivered to your door. We’ve had so

many requests from readers who prefer to have the mag on their coffee table but

don’t always have time to pick up a copy from a distributor. Check out page 6 for

all the details – subscriptions will start from our next (winter) issue. There is a cost

involved in subscribing, but we will continue to have the magazine available for free

both online and through distributing outlets.

We look forward to sharing more exciting news with you soon!

Speaking of exciting things, I attended the National Disability Services (NDS) NDIS

Conference in Canberra in March and had the privilege of listening to Moira Kelly

tell her story. I truly appreciate how Moira was awarded the 2003 Victorian of the

Year among other accolades and awards she has received.

Moira held the 600 plus audience captive with her story and what led her to

become one of the most inspirational mothers to many children with special needs.

Unlike most of us, Moira chose to become a mother to children with special needs

and to improve their lives. Her message really hit home as I was listening to her.

Children with a disability are challenging but the joy and love they give you is

indescribable. Their ability to overcome challenges and persevere to achieve new

skills all the time shows the strength and determination they have. Well done Moira,

you are one heck of an amazing woman.

Until next time,

Emma Price, Publisher

Editorial and advertising in Source Kids is based on material, written and verbal, provided by contributors and advertisers. No responsibility is taken for errors or omissions and opinions expressed do not necessarily reflect those of the publisher. All material in Source Kids is subject to copyright provisions. No part of this publication may be reproduced without written permission by the publisher.

DistributionSource kids is distributed through therapy centres, hospitals, paediatricians, special needs schools and early intervention centres. For distribution enquires, contact [email protected]

Welcome to our Autumn edition of Source Kids

Page 5: Source Kids Autumn Issue May 2015

AUTUMN 2015 5

GRAVITY CHAIRWe road tested the Gravity Chair recently and felt the need to recommend this product to readers.

The Gravity Chair is a supportive foam positioning system and provides postural support and control, using gravity to hold the individual.

The chair has a stable seating position, raised armrests and comes with a number of accessories including a therapy tray for activities or eating, mobile base for easy moving, a supportive headrest and a wedge that can be placed underneath the chair to tilt it forwards or back as needed.

The Gravity Chair comes in four sizes (small to extra large).

To find out more or to purchase visit www.medifab.com.au

EMBRACEA gorgeous watch designed to save lives!

As the mother of a child who has seizures, discovering the Embrace literally brought tears to my eyes.

Embrace is designed to be a gorgeous watch: the band is lush Italian leather and the case is strong, polished metal. It is the thinnest smart watch of its kind ever made. It snaps on, then tightens with a magnet for perfect fit.

Embrace is a smart watch – designed so you can check your entire day in a glance in a way that is easy to understand. Not only during exercise, but also at work, during your commute, during the night. If you push yourself too much, the Embrace will gently remind you with a vibration, that you need some time to recover. You can customise it to suit your needs and behaviour. This is what wearables were supposed to be: quiet small and useful.

But Embrace is so much more than that.

When people who have Epilepsy wear Embrace, they will get an alert when an unusual event, like a convulsive seizure, happens. It will go via their smartphone to parents, roommates or caregivers, so somebody can check on them. Additionally, one of these caregivers can wear a ‘companion’ Embrace too. When the two Embraces are within range (e.g. in nearby rooms), the ‘companion’ Embrace worn by the caregivers will vibrate to alert them.

Empatica, the team behind Embrace, will be officially launching the Embrace in October 2015. Currently they are running a crowdfunding campaign through www.indiegogo.com, asking people to purchase their watch now to fund its production. During the campaign, ‘a buy one donate one to a person with epilepsy’ scheme ensured that 1540 watches will be given to people who may not be able to afford one.

Go to www.empatica.com for more information.

INDOOR SEATING

GRAVITY CHAIR

CENTRE OF GRAVITY is very low to offer a stable seating position

Raised armrests 'BOLSTER' THE USER LATERALLY. This high armrest position facilitates free breathing to enable increased blood oxygen.

Seating configuration UTILISES GRAVITY to ‘hold’ the individual very comfortably

Using the wedge accessory, the head and body position can be stabilised with tilt (including sideways tilt), for patients such as those with Scoliosis.

Very light, which enables it to be used almost anywhere!

GRAVIT

Y C

HA

IR

Client group

Accessories:

• Patients who can only lie down learn to be able to sit in the Gravity Chair.

• With patients who spasm, Gravity Chair absorbs the tension. After the spasm, the chair brings theuser back into the original position.

• Patients with perception deficit or ADHD get close body contact in the Gravity Chair which raises self-awareness. This helps the user to stay calm. Gravity Chair can create an optimal solution for many occupational therapy requirements.

More than just a comfortable seat…

SIZE CODE USER HEIGHT

SEAT DEPTH

SEAT WIDTHAT BACK

SEAT WIDTHAT FRONT

BACK HEIGHT

TOTAL WIDTH OF CHAIR

TOTAL HEIGHTOF CHAIR

TOTAL DEPTHOF CHAIR

SML (1) 3781 90 -110 cm 26 cm 20 cm 27 cm 60 cm 46 cm 55 cm 60 cm

MED (2) 3782 110 -130cm 32 cm 23 cm 30.5 cm 69 cm 49 cm 61 cm 71 cm

LGE (3) 3783 130 -150cm 40 cm 27 cm 37 cm 74 cm 57 cm 66 cm 82.5 cm

XLGE (4) 3784 150 -170cm 45 cm 30 cm 40 cm 80 cm 60 cm 71 cm 91 cm

Supportive foam positioning system to augment postural control for a wide range of individuals. Gravity Chair follows the principle ‘Tension and Relaxation’ whereby it:

1. Provides alternative seating

2. Serves the therapeutical aim of stable positioning

• Removable and washable cover

• Breathable seating insert

• Incontinence resistant sitting surface

• Headrest

• Hip belt

• Velcro© attached side pouch

Standard Configuration:

Supportive Headrest Occipital and Extended

Lateral options available

Wipeable Covers 1 #3781-0100-000 2 #3782-0100-000 3 #3783-0100-000 4 #3784-0100-000

Mobile Base 1 #3780-8701-000 2 #3780-8702-000 3 #3780-8703-000 4 #3780-8704-000

Therapy Tray Table Small #3780-7101-000 Large #3780-7102-000 Wide #3780-7103-000

www.medifab.comNZ 0800 543 343AU 1300 543 343

[email protected]

Products love We

Page 6: Source Kids Autumn Issue May 2015

6 AUTUMN 2015

To subscribe complete the following form and post it to Source Kids, PO Box 5279, Launceston TAS 7250, email it to [email protected] or jump online and subscribe at www.sourcekids.com.au

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Everyday Kids is the paediatric division of Everyday Independence, providing occupational therapy, physiotherapy and speech pathology services across NSW and VIC since 1997. We deliver evidence based interventions to children of all ages and abilities in their homes, schools and local communities to assist them to achieve their full potential. We are also a registered provider to the NDIS, approved to provide a range of support items.

Our kid’s therapy toy store located in Caulfield VIC and online, is filled with products handpicked by our therapists for use in therapy and play. Kids Source readers can access a 10% discount by entering code KIDS10 at www.everydaykids.com.au

To find out more about our therapy services, find us online at www.everydayind.com.au

everydaykids

Be the first to receive all four copies of Source Kids each year for just $55 and have them delivered straight to your door. To subscribe, simply complete your details below and post to PO Box 5279, Launceston TAS 7250, or jump online and fill out our form at www.sourcekids.com.au.

Subscription will commence from the next issue upon confirmation of subscription and payment.

Safe Surround BedsTake the nightmare out of night time!

Contact Medifab to discuss how we can solve your night time needs with Safe Surround Beds:

Call: 1300 543 343 Email: [email protected] www.medifab.com.au/safenight

SUPERIOR ENVIRONMENT FOR CHILDREN WITH SPECIAL NEEDSDesigned to allow the child to be safe and secure in a sturdy bed

SAFE SURROUND

PLUSFor Space and

Safety

SAFE SURROUND

GENIESpecialist Care

Built extremely stable, designed for both ambulatory and non-ambulatory children.

Provides a safe environment to sleep and play, and protects the child from harming themselves. Options available to meet your child’s medical, physical and behavioural needs.

Discover peace of mind!

Versatile bed, ideal for the patient who is non-ambulatory and needs a secure safe bed to sleep in and receive care. Safety rail height stays consistent when the bed is raised and lowered.

The caregiver’s friend, with height adjustment, easy access and ease of cleaning under the bed.

Delivery & Set-up Australia wide!

Issue 1 April 2014Free Issue 3 – December 2014

Make the most of this summer

All about nutrition

including recipes

from Pete Evans

Christmas survival guide and gift ideas

Taking a holiday

with your special needs child

managing siblings

fragile X

syndrome explained

Issue 1 April 2014

PLUS | You have a diagnosis

– now what?

| Autism explained

6 tips to help You cope

FeeLing the PreSSUre?

The SOS approach To feeding

Better Start?

your questions answered

MainstreaM vs DevelopMent school

Medical Marijuana and epilepsy illegal or useful?

Freeissue 1 – June 2014

NDIS

Issue 1 April 2014Free

Issue 2 – September 2014

Tips for choosing your therapistreaching for rio our young superstars

KabuKi Syndrome Building CommunityKids go riding

the latest on

medical marijuana

Issue 1 April 2014FreeAutumn 2015

Tubular ScleroSiS Sophie’s Story

Your guide to

reSpiTe

NDiS update

Deon Kenzie

breaking records

Twice exceptional

NE

WSubscribe to source kids

Page 7: Source Kids Autumn Issue May 2015

AUTUMN 2015 7

NDIS ACT ConferenceIn March, National Disability Services held the largest conference yet on the National Disability Insurance Scheme (NDIS) in Canberra, attracting more than 600 delegates from ACT and other states.

The conference was officially opened by Joy Burch the ACT Minister for Disability and also heard from Dougie Herd, Disability Advocate, Bruce Bonyhady, Chair of the NDIA Board, Senator the Hon. Mitch Fifield, Assistant Minister for Human Services and David Bowen, Chief Executive NDIA. In the disability field this equates to a star studded line-up.

The two-day event gave ACT service providers and individuals affected by NDIS the opportunity to learn more about the rollout of NDIS and key learning’s from the trial sites.

bodysuits for big kids• specialising in hard-to-find sizes 2-14

which fits kids of all ages and most adults

• low legs to help keep wandering hands out of nappies and pants

• deters inappropriate undressing and keeps tummies covered

•FREESHIPPING within Australia - worldwide shipping available * discount excludes deliveryweb: www.wonsie.com.au | email: [email protected]

use code‘WONSIE’for 20% off3 or more*

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WE HELP WITH ALL SENSORY,

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Clinics at Yeerongpilly & Albany Creek

Tel: 1300 136 596www.kidsmatters.com.au

Empowering Families + Transforming Lives

Help your child explore movement and colour while developing coordination and big kid core, back and leg muscles!

So much fun!

Rare Disease SummitRare Voices Australia (RVA) hosted a Rare Disease Summit on Friday 27 and Saturday 28 March in Melbourne to develop A National Rare Disease Plan, Driving Collaboration, Driving Action.

RVA Executive Director Megan Fookes said “The Rare Disease Summit brought together over 120 delegates from across the country as well as representation from New Zealand, Switzerland, United Kingdom and Singapore.

The two-day summit allowed participants to join the conversation and bring consolidated input to the dialogue driving A National Plan for Rare Diseases”.

RVA is encouraged to see many voices now working together driving collaboration and driving action. RVA is calling for the Federal Government to adopt a national approach to rare diseases” said Fookes.

Page 8: Source Kids Autumn Issue May 2015

8 AUTUMN 2015

1 Read your current IEP before the meeting to remind yourself what was on it and see the progress your child has made.

2 If your child hasn’t met those goals, were the appropriate supports in place to help them achieve their goals? Or were the goals not realistic in the time-frame? Work out why those goals weren’t achieved.

3 Write down any questions or concerns to take in with you to the meeting so you don’t forget to discuss them.

4 Have an idea of what you would like your child’s goals for the year to be. Remember to include academic, behavioural and physical goals.

5 Make the goals achievable and measurable. Instead of “Johnny won’t disrupt the class” try “Johnny will raise his hand eight out of ten times when he wants to speak”.

6 Take a support person with you to be an extra set of ears and to help you remember what was discussed.

7 Take the IEP home to review and sign. It’s a lot of pressure at the meeting and you don’t want to forget to include anything.

8 Remember that an IEP is there to help your child reach their full potential. Everyone is working towards the same goal, so be prepared, but not nervous.

HOW TO NEGOTIATE YOUR CHILD’S IEP

Preparing your child’s Individual Education Plan (IEP)

with their teacher can be difficult for some parents. An

IEP is basically a plan that outlines your child’s goals

for the year and what methods will be used to ensure

they are achieved. We’ve developed these eight tips

to help get the most benefit out of yours.

8 TOP TIPS

Page 9: Source Kids Autumn Issue May 2015

AUTUMN 2015 9

genes currently known to be associated with an infantile encephalopathy phenotype. NGS testing of these known genes as part of a ‘diagnostic panel’ offers an attractive diagnostic tool in terms of financial cost, comprehensiveness of genes screened, and turnaround time.

Distinct clinical advantages for the utilisation of a diagnostic panel in an appropriate patient include:

•Tosecureanaccurateandconfirmedclinical/molecular diagnosis to:

– Institute early therapeutic intervention where possible

– Provide the family/patient with an understanding of the disease’s natural history and prognosis.

• Toofferatargetedexaminationof other at risk family members i.e. cascade testing.

Some examples of clinically useful diagnostic gene panels being offered by a range of service providers include:

• HereditaryCancerSyndromes – Breast Cancer – Colon Cancer and Polyposis

Syndromes (Lynch Syndrome) – Prostate Cancer – Endocrine tumours – Epilepsy syndromes and migraines

• SensorineuralHearingLoss(SNHL) – Nonsyndromic SNHL – Autosomal recessive SNHL – Autosomal dominant SNHL – X-linked SNHL

• Congenitalbrainmalformations

• Neuromusculardiseases (e.g. Charcot-Marie-Tooth Disease)

• Ionchanneldiseases(e.g.CardiacArrthymias, Myotonia Congenita)

• Connectivetissuediseases (e.g. Ehlers-Danlos Syndrome)

• Geneticoculardiseases (e.g. Retinitis Pigmentosa)

In approximately 80-90% of clinically diagnosed complex genetic diseases, the causative gene variation is not found by single gene testing. This is due to the fact that the classical sequencing of gene by gene is expensive and time consuming. The last five years have seen an explosion of novel genetic testing technologies that have transitions from the bench side, as a research tool, to the bedside, as clinical tools. The most notable example has been the evolution of Next Generation Sequencing (NGS).

NGS is in essence a massive parallel gene sequencing technique, which means that millions of small fragments of DNA can be sequenced simultaneously. Previous methods could sequence one DNA fragment at a time i.e. examining one gene at a time which is both expensive in time and financial considerations. NGS allows the sequencing of massive amounts of genetic material from the one blood sample, allowing the time (and cost) effective collection of a significant amount of genetic information. Genetic laboratories are in the early phases of introducing NGS into clinical practise; however the use of this technology requires careful consideration.

Currently the NGS technologies can be tailored towards;

•‘Diagnosticgenepanels’i.e.knowngenes associated with a specific clinical phenotype, or

•GenomeWideExomeSequencing(GWES) i.e. the entire coding DNA is sequenced.

NGS in health care – Diagnostic Gene PanelsDiagnostic Gene Panels are an exceptionally powerful clinical tool for a tightly defined clinical phenotype in which there is genetic heterogeneity i.e. multiple genes associated with the clinical phenotype, for example there are over 130

• Cardiacdisease(e.g.DilatedandHypertrophic Cardiomyopathy)

• Inbornerrorsofmetabolism(e.g.Mitochondrial diseases, Lysosomal storages diseases)

• Dysmoprhicsyndromeswithaknownmolecular/genetic basis

NGS in Health Care – GWESExtending this NGS further, it is becoming possible to undertake whole exome genome analysis for select patients. In this type of analysis, it is possible for scientists to look at the entire genetic make-up of a patient. This type of testing is most often utilised in the research setting while looking for a causative gene. Careful patient selection and genetic counseling is imperative as GWES can provide unforeseen collateral information such as carrier status for diseases such as cystic fibrosis, or of mutations in cancer predisposition genes. GWES is only a tool for Clinical Geneticists at this stage.

NGS ChallengesThe devil is in the detail of the bioinformatics analysis of these complex genetic tests. Cost is still a limiting factor for many families. A targeted NGS diagnostic panel may cost as little as $1000, while GWES can cost between $3000-5000 in the current climate. The ethical utilisation of NGS technologies in ‘personalised genomics’ and in assisted reproductive fertility streams of medicine are areas for ongoing caution and careful consideration.

A/Prof David Coman MBBS MPhil FRACP

General Paediatrician/Metabolic Physician/Clinical Geneticist

Medical Director of Paediatrics, The Wesley Hospital, Brisbane

Academic Lead for Paediatrics, UnitingCare Clinical School

Ph (07) 3371 5122

www.drdavidcoman.com.au www.facebook.com/DrComan

Medical Director, Advanced Medical Diagnostics

www.advancedmd.com.au | www.facebook.com/AdvancedMedicalDiagnostics

Board Member, Rare Voices Australia

www.rarevoices.org.au | www.facebook.com/RareVoicesAustralia

NEXT GENERATION GENETICS FOR THE NEXT GENERATION

...to infinity and beyondWords by Dr David Coman

Page 10: Source Kids Autumn Issue May 2015

10 AUTUMN 2015

What kind of respite do you need?• Doyouneedtotakeafewhourstogetyourhousework

done and paperwork completed?

• Doyouneedtogetahaircut?

• Doesyourchildwakeduringthenightandyou’redesperate for a full night’s sleep?

• Wouldyouliketospendsometimewithyourotherchildren – allowing their needs to come first for a change?

• Isthereaholidayyou’dliketotakethatisn’tsuitableforyour special needs child?

• Doyoujustneedabreakfrombeingacarertobe‘you’again for a bit?

THE INS AND OUTS OF

respite

Taking a break can seem like a ‘cop-out’ or not fully shouldering your responsibilities, but it’s essential to make sure that you can continue to care for your very special child in the years to come. This journey

is a long one and a bit of help from time to time is essential to remain in good health.

Respite is defined as planned, time-limited, short-term breaks for the primary caregiver and comes in many ways, shapes and forms. There is also the possibility of emergency respite in a crisis situation. There may be a number of different types of respite that could suit your family depending on your circumstances:

Everyone needs a break, but sometimes parents of children with special needs are so busy looking after their child’s needs that they forget to care of themselves, their relationships and also the family as a whole.

Page 11: Source Kids Autumn Issue May 2015

AUTUMN 2015 11

FamilyPros: They usually want to help.

They love you and your children and want to care for them.

Cons: As your parents age, they may find it difficult to manage physically, especially if your child has a physical disability.

They may think your child is being naughty or difficult and try to manage behaviours in a way you don’t agree with.

FriendsPros: One would imagine that they are your friends because

you like them and have similar values and perspectives to them.

You can swap babysitting so you don’t feel like you are taking advantage of them.

If they know you well, they will have some idea what taking care of your child involves and will know how you approach things, so will be able to replicate that when you are not there.

Cons: They are also busy and you don’t want them to feel obligated to help you too.

They may feel unqualified to manage medical situations and emergencies.

If you are in similar stages in life and they also have children of their own, it may just be too much for them to manage your child as well as theirs.

In-home respite carer Option 1 – you remain in the home

Pros: Your child can remain in their home and not have their routine or environment changed.

You don’t have to pack and move your child, perhaps creating more extra hassle than it’s worth.

You can get all your jobs done and/or sleep!

Cons: They won’t necessarily be able to look after your other children, so you will still need to make arrangements for them.

You will still hear your child and may find it difficult to not tend to them if they need/want you.

You’ll have a stranger in your home, which might make you feel a bit awkward. Depending on the service you are using, you may not have a continuity of care.

Option 2 – you can leave the home:

Pros: Shopping! Haircut! Manicure! Wishful thinking …

You can get things done knowing that your child is being cared for by a qualified carer, and have a guilt-free break.

Cons: The carer won’t know your child initially and they may not want to be left with a stranger.

You won’t know how well they will care for your child when you’re not there.

Respite centresRespite centres provide a safe, reliable and differentiated space for your child with special needs. Staff are trained to provide the care your child needs. Centres can provide day respite, with

What kind of respite is there?Respite can be as casual as a friend stopping by to watch your child while you pop down to the shops, or as scheduled as a week away at a special needs holiday program or respite centre.

Obviously, while friends and family can be a wonderful resource, it is often difficult to ask for favours unless you are in a bind or to rely on the kind natures of your loved ones on an ongoing basis. Using carers, whether in your home or in a respite centre may seem like a clinical option but it is important to make sure that you all have a bit of a break from one another to continue the journey with your sanity intact.

As with everything in life, there are pros and cons for all respite options:

Page 12: Source Kids Autumn Issue May 2015

12 AUTUMN 2015

Employing a nannyYou can decide on the level of help you need and employ someone accordingly. They can help with school drop-offs and pick-ups, supervise homework, look after other children while you’re taking your SN child to appointments, do therapy homework with your child or you could choose to have a nanny who helps you through the 4-7pm crazy time. It’s your call.

Pros: You can choose the hours and days they work for you.

You will consistently have the same person caring for your child.

As they work for you, you can negotiate what their job description will be.

Cons: If they get sick, you will be stuck without help.

There is some extra admin involved in employing someone.

It could be expensive.

Employing an au pairTypically a young person from overseas who lives with you and helps with the housework and looking after the children in return for board, lodging and a small salary. There are plenty of au pair agencies that are happy to pair your family with an au pair who has some special needs experience.

Pros: In-house help and babysitting.

Your children will get to know the au pair very well.

A very cost effective option.

Cons: Au pairs usually only stay for a year at the most.

You might not get on with the au pair – although usually agencies will send someone else if you aren’t happy.

You will have someone else living in your house.

Long day care, vacation careMost day care centres receive inclusion support funding to allow them to adequately staff the centre to provide care for the children with special needs that they enrol. There is some extra paperwork involved but most centres will be happy to arrange that for you. The extra staffing they receive funding for will be determined by your child’s extra needs.

Pros: You get a break.

Your child gets to socialise in a mainstream environment.

It’s amazing what a spot of peer pressure can achieve (watching other children eating or toileting independently could encourage your child to have go, too).

If your child has high support needs they could have a support worker funded for them and can build a beautiful relationship with them.

Your child’s therapists may be happy to provide therapy visits at the centre and show the support worker some ideas on what to work on with your child.

Cons: Lots of germs!

The possibility of your child being teased, bullied or ignored.

If your child is sick, you will have to keep them at home.

activities that are suitable and engaging, and the opportunity to make friends. Respite centres can also provide overnight respite – fantastic if you need to be away or even just (just!) to get a full night’s sleep.

Pros: Your child can have some independence, fun and make some new friends.

You can have a proper break and time to spend with your other children, to do things that may be difficult when their sibling is present.

Cons: Leaving your child in a place they don’t know, with people they don’t know can be challenging – especially the first time.

Holiday campsEspecially well suited to older children and teens with special needs, holiday camps can be an exciting and stimulating option for your child. Allowing your child the opportunity to have an amazing experience without their primary carer hovering around but still providing their necessary care requirements.

Pros: A brilliant way for your child to have independent fun and learning opportunities.

You can take a holiday at the same time.

Cons: Letting your child go for a week and being able to trust that they will be properly and lovingly cared for.

Missing your ‘baby’.

What if you can’t access respite?The demands having a child with special needs can place on a family are enormous. Sleep issues, behavioural issues, feeding issues and all the extra medical appointments and hospital stays can take their toll on even the strongest of families. If you don’t have family or friends who can help and you aren’t eligible for respite funding or there aren’t any places available you could consider:

Page 13: Source Kids Autumn Issue May 2015

AUTUMN 2015 13

Respite is vital for parents of children with special needs for a variety of reasons. Respite gives parents time for self-care and is a chance for parents to focus on their own personal identity.

Self-care plays an important role in reducing stress and preventing burnout for parents who are often under significant pressure raising a child with complex care needs, whilst juggling everything else life throws their way.

Self-care can be any activity or time spent doing something that you enjoy and reduces your stress. The problem with self-care is that it requires time; something parents of children with special needs do not often have much of! Thus, respite can provide a desperately needed break for a parent, giving them the opportunity to nurture themselves.

Respite also helps parents to build and reflect on their own personal identity, which is the sense of who they are as an individual and the connection they have with their social roles (parent, carer, husband, wife etc.).

Our personal identity is shaped by the roles we play, the experiences we have and our social environment. For a parent of a child with special needs, identity is often difficult to separate from the role of carer and there is a risk that ‘who you are’ can be lost in amongst your child’s own identity and needs.

For most, parenting makes us question, “Who am I?” and this is particularly true for parents who are also their child’s carer. For some, multiple roles can fit together to form personal identity; but for others these roles can conflict or overshadow each other, making respite even more valuable for allowing time to find out who you are and who you want to be. Respite, whether brief, lengthy, formal or informal, offers this precious time out to reflect on your own identity, wants, needs and feelings.

WHY RESPITE IS IMPORTANT

Zalia Powell Social Worker (BSW Hons)

Page 14: Source Kids Autumn Issue May 2015

14 AUTUMN 2015

The true-blue custom-made

Std Cambar Joey 100% Australian and custom built for you. www.mogowheelchairs.com.au

As the name implies, the Joey is the junior version of the Std Cambar, with all the same precise detailing you require in a chair, with only one minor change: the Joey has a ‘minimum’ seat width restriction of 8”. Apart from that it is the same and it can be made as sedate or as bright as you want.

Making your chair starts with a comprehensive measure up and drawing to your specifications, and then, after quoting and acceptance, the chair is manufactured, starting with a welder

and designer going over your details before fabrication begins. From there each phase of the manufacture is overseen, and once assembled and completed it is thoroughly checked before reaching you the end user and wherever possible, Mogo will personally deliver and set you up in your new chair. Also, for that personal touch, they do graphic paint jobs and artwork.

Everybody is different … which is why everybody needs something different when it comes to a wheelchair. We’ve scoured the globe looking for the edgiest, latest and greatest and have come up with some awesome options!

WheelchairsProduct review

For the beach and the slopes!

Hippocampe The freedom to go – anywhere! www.vipamat.com (there are a number of distributors in Australia)

Practical and lightweight, the compact Hippocampe, with fold-down seat back, removable push bar and detachable wheels, can be assembled in under a minute. It’s weight is from 20kg (depending on inclusions), is easy to move and packs down in moments into a stylish carrying case – easy to pop in the boot of the car or on an aeroplane.

Robust and stable, with a neutral buoyancy design that allows it to be used in or out of the water, the Hippocampe can move over sand with ease due to it’s double width wheels and special sleeving on the aluminium frame ensuring the frame doesn’t get hot in the sun.

Available with a number of add-ons, including balloon tyres for ultra-soft sand and a clip on ski foot for use in the snow!

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Phone (07) 5527 9794 or visit www.specialneedssolutions.com.au

Specialising in fun, funky and functional equipment, with a range of:

Follow us

⃝ seating systems ⃝ standing frames ⃝ sleep systems ⃝ walking aids ⃝ bathing/toileting aids ⃝ strollers and buggies ⃝ tricycles and much more

KuduBrace yourself for Kudu! www.r82.com and www.specialneedssolutions.com.au

A growth adaptable wheelchair for comfort and support, Kudu is a practical indoor and outdoor wheelchair that combines form and functionality to provide the user with the right fit and to support a comfortable posture.

A significant feature of the Kudu is the new self-centring tilt-in-space that provides effortless tilting of the seat while maintaining

optimum balance. Kudu remains stable with the back reclined and the self-centring tilt-in-space activated.

Ergonomic considerations have been taken into account to enhance the child’s comfort and minimise the caregiver’s effort when manoeuvring the wheelchair. Kudu is designed with a facility to change the back recline angle without tools. For convenient transportation purposes, the backrest can be collapsed horizontally and the wheels can be removed.

The all-rounder

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16 AUTUMN 2015

SPECIALISTS IN TECHNICAL AIDS FOR CHILDREN

NOW SERVICING THE PUBLIC DIRECT

IN NSW AND ACT

FEATURE PACKED AND CUSTOMISED

• Self centering tilt in space and recline• Adaptable to grow with the child• Crash tested and suitable for transport• Large variety of accessories and options• Available in four sizes and various colours

To locate your nearest stockist go to www.R82.com.au

Email [email protected] or call (02) 8213 6666

Consult directly with the manufacturer to establish the most suitable equipment for your child.

SEATING STANDING WALKING BATHROOM

Kudu Wheelchair

NEW FROM R82

IN 2015

Contact us to arrange an assessment at a time and place that suits you.

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AUTUMN 2015 17

For the teeny tot

Zippie KidzExplore with the smallest Zippie perfect for independent toddlers! www.sunrisemedical.com.au

Available in standard or reverse wheel configurations, the Kidz is ideal for growing toddlers who are learning to navigate their world through mobility!

Self-propulsion allows children to explore and interact with their environment! The Kidz was designed to give toddlers maximum independence by providing them access to the wheels.

When your child is learning to propel, the push wheels can be placed in reverse configuration at the front of the frame for best access. As their reach grows, the wheels may be moved to the rear of the frame.

Interaction with peers is essential to children’s development. The Kidz chair is available with seat heights as low as 10 3/4”. This allows your child to interact with peers at eye level and easily travel between the wheelchair and the floor during playtime.

For the laidback

Rifton CGXSpecialised centre of gravity tilt-in-space mobility. www.pme.com.au

One of the greatest features of the CGX (Centre of Gravity eXperience) tilt in space wheelchair is the cable-free design and the elimination of the need for conventional tilt mechanisms. The new cable-free design results in fewer moving parts and less maintenance. The entire tilt engagement system is under the centre of the chair and not on the sides, adding to the clean, non-clinical beauty of the chair. The CGX supports a 113kg weight capacity for 10”- 18” widths and depths. In addition, the Extra Wide is still available with a 136kg weight capacity and it also includes lift assist for stable and nearly effortless tilt for heavier clients.

FEATURE PACKED AND CUSTOMISED

• Self centering tilt in space and recline• Adaptable to grow with the child• Crash tested and suitable for transport• Large variety of accessories and options• Available in four sizes and various colours

To locate your nearest stockist go to www.R82.com.au

MODEL SPECIFICATIONS

Cambar Joey Hippocampe Kudu Rifton CGX Zippie Kidz

Sizes Available Custom Four Four Two Styles One (adjustable)

Seat/Frame Width From 20cm 42cm From 26–38cm Four available from 25–56cm 25.5–35.5cm

Seat/Frame Depth From 20cm From 22–38cm Four available from 26–56cm 20.5–35.5cm

Back Height Custom 37–47cm 37–63cm From 53–69cm 25–36cm

Max User Weight 40–60kg From 90.6–135.9kg 68kg

Weight of Chair From 20kg 19–25kg From 17.2kg 6.5kg

Width Custom 67cm 59–71cm From 67cm 46–56cm

Length Custom From 167–202cm 69–74cm

Height Custom 1m 94cm

TiltNo -5 to 30 degrees

in all modelsYes

ReclineNo -3 to 45 degrees in all

models

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18 AUTUMN 2015

Highlands regions, South Coast and Snowy Mountain regions, ACT and surrounding regions, South West Slopes and major regional Centres including The Riverina and Central West Slopes.

With leading brands such as Rifton, Freedom Designs, Spex, Sunrise Medical, Convaid, Otto Bock and Thomashilfen just to name a few, you can be rest assured knowing that you are dealing with a reputable Australian company who stand by their products.

Our commitment to continual improvement, training and market awareness make us both the retailer of choice for manufacturers, and the supplier of choice for our clients.

Improved life quality and freedom – For those special to you…

PME GroupFormerly Paediatric Mobility Equipment is a family operated business that commenced in the year 2000, with a commitment to providing high quality assistive technology equipment specifically for children and young adults. Today, this Australian family-owned business supplies equipment to individuals, institutions, hospitals and resellers, nationwide.

Our extensive range meets stringent quality standards – we stock only reputable brands from our most trusted manufacturers, suppliers and stockists – giving you value for money and peace of mind.

Our experienced staff will assist with any enquiry, and we pride ourselves on fast efficient despatch and delivery nationwide. With a strong focus on customer service, the right advice and caring staff, PME Group provide an extensive range of special needs products to suit any individual requirement.

PME Group is fast becoming Australia’s most recognised market leader in the supply of assistive technology equipment for children and young adults. Our proactivity and caring approach enables us to provide premium service and a well-chosen range of products to meet our client’s needs, and the expectations of therapists and carers.

PME Group have showrooms in Sydney, Geelong and Canberra with the head office located in Young NSW. Distance and location are no boundary for PME, with multiple sales and service representatives servicing The Hunter, Illawarra and Southern

1300 131 884www.pmegroup.com.au

Mobility • Seating • Standing • Positioning • Hygiene • Manual Handling

IMA

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Zippie X’CAPE Wheelchair available from PME Group

ADVERTORIAL

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With the support of donors, volunteers and major corporate supporters Canon and AV Jennings, the Foundation also provides respite camps each year.

“The support camps at Lake Macquarie are for families of those suffering rare disease and that is unique in that it is for the whole family - carers, grandparents and siblings – and that gives everyone a real break for four days,’’ Mr Russell says.

“We also raise awareness about rare diseases, supporting World Rare Diseases Day on the last day of February each year.’’

For more details about the work of the Foundation, its grants process or to donate, go to www.stevewaughfoundation.com.au

The Steve Waugh Foundation has been going into bat for children with rare diseases for almost a decade. Foundation executive officer Paul Russell says more than 500 families affected by extremely rare conditions have been helped during that time.

The former Australian cricket captain set up the Foundation after his career finished in 2004 because he and his wife Lynette wanted to help children not being offered government assistance. Mr Russell says the rare disease patient is the orphan of the health system and has little support available to them.

“We provide individual grants for people aged up to 25 who have a 2:100,000 rare disease. There are 8000 rare diseases that we know about and some that are so rare they don’t even have a name,’’ Mr Russell explains.

“When you might be the only one in Australia suffering from a disease, you don’t have access to a support group or a charity – we are somewhere to turn for those people.’’

Over the last two years alone, there have been 103 grants provided, ranging from $1000 to $70,000.

Mr Russell says about 95 per cent of grant applications are approved by the charity – helping people with equipment such as electric wheelchairs, portable oxygen units and spas, through to items including medicine. The grant applications are assessed by an independent panel including two Paediatricians and two Geneticists, who make recommendations to the Foundation, which then makes a final decision.

2015 Grant application details

ROUND 1 Closed 31 March

ROUND 2 1 June (applications open) to 30 June (applications close)

ROUND 3 1 September (applications open) to 30 September (applications close)

STEVE WAUGH FOUNDATION

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SOPHIE’S STORY

Knowledge is power and for one Launceston family living with a

special needs child, education is the priority. Sophie Schilg lives with a rare condition called Tuberous

Sclerosis. The six-year-old is integrating into mainstream school

for the first time this year, but for this little girl, life is far from ‘normal’.

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Parents George and Scott had never heard of Tuberous Sclerosis Complex (TSC) until Sophie was diagnosed at nine months old.“The first indication that something was wrong was when we found her in her cot having a seizure.

We spent about five nights in hospital with ongoing seizures, multiple blood tests, a lumbar puncture, ultrasounds, an EEG and a brain MRI, after which we were told that Sophie had TSC,’’ George recalls.

“However, looking back her development had been slow, although it had not been of significant concern up until that time.’’

Adjusting to the condition was hard – damn hard, the Schilg’s say.

“When a baby is born you have hopes and dreams for it, and then to be told that it has a life changing condition – a condition you have never heard of, a condition where there are no exact answers, and there is no cure - then it is a very difficult time,’’ admits George.

“You have to draw on the love and support of your family and friends to get through the difficult days, and cherish all the happy memories. As time goes by you see your little one making progress – however small the steps, it is still exciting and makes you feel proud.’’

Sophie has one small rhabdomyoma in her heart, she has facial angiofibromas and other skin changes, she has a mild to moderate intellectual disability and her behaviour and learning ability are affected. She is also at risk of developing a type of brain tumour known as a SEGA, angiomyolipomas in her kidneys, and changes to her eyes.

“In 2013, Sophie had neurosurgery to remove several tubers that were causing significant seizures. It was hoped that post surgery she may be seizure-free without medications, however, seizures have persisted, although they are now coming from a different focus,’’ explains Scott.

“She currently takes two drugs to control her seizures. Every one to three years, Sophie requires imaging of her brain, kidneys, lungs and heart to check for any changes. She also has regular ophthalmology reviews to check for eye changes as an effect on peripheral vision is a side-effect of one of her drugs.”

Sophie attends speech therapy and the Schilgs say that education for Sophie is their primary concern. She will spend two days each week at a mainstream school and the other three days at a support school.

“While we are excited that Sophie is taking on this new challenge, we hope that her needs will be met, both with her learning and other simple tasks that many of us take for granted – such as prompting her to go to the toilet, ensuring she makes the right choice with morning tea and lunch, assisting her to change into her sports clothes and that she will be able to access the additional assistance she requires within her local school,’’ says George.

“Cuts to education and health seem to be a constant concern at present in Tasmania – concerns that parents of children with special needs, should not have to contend with.’’

Another frustration for the family, which also includes son Max, 4, is the lack of specialist assistance in Tasmania.

Sophie’s neurology, cardiology and ophthalmology specialists visit from Melbourne, often for just one day, every three months and some procedures, such as video EEG, are not available on the island, necessitating travel to the Royal Children’s Hospital in Melbourne.

The family is interested to learn more about a neurosurgery procedure occurring in the United States, whereby some of the brain tubers can be ablated (blasted), to eliminate their epileptic focus.

“This surgery appears to be much less invasive than the long, open techniques currently used in Australia. However, knowledge here regarding this is limited, and no doubt the costs of such technology are probably also prohibitive. However, it is something to lobby, hope and pray for,’’ George says.

“Since Sophie’s diagnosis, I believe that knowledge is power. I must engage in relevant information so as to know what opportunities there are, to make informed choices and to constantly advocate for Sophie and my family. At times this is tough and wearing but if something does not feel right then I need to speak up on Sophie’s behalf.’’

While that may be in the distant future, for now, the Schilgs have a simple hope for their precious daughter.

“Our main goal is she lives a happy and fun life and is an active contributor to the community.’’

Our cover story

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Q What are the latest treatment options for people with TSC?

A The new class of medicines that target the tumours that grow in Tuberous Sclerosis are called mTOR inhibitors. These medicines are approved for use for SEGA brain tumours and Kidney AML tumours and are in clinical trial for both Epilepsy and as a cream for the skin signs of TSC.

Australians with TSC have contributed to this achievement through funding research through Tuberous Sclerosis Australia, participating in clinical trials and advocating for funding of the medicines through the PBS.

In addition, Epilepsy treatments improve all the time. New medicines and improving surgical techniques are helping to reduce the number of people with TSC who live with disabling seizures.

In addition, we are securing funding for a large national meeting in November this year.

Q Which support groups/assistance would you suggest for families?

A Contacting Tuberous Sclerosis Australia (TSA) is a good first step. We can provide information about TSC and connect you to health professionals with experience in managing TSC. Our website includes balanced, accurate and up-to-date information about this complex condition.

TSA manages a supportive Facebook community where you can also connect with other families in your local area or those facing similar challenges.

Our face-to-face events are an opportunity to learn from health professionals, researchers and each other. Social gatherings held around Australia each year can also be a chance to meet others that can offer advice, share triumphs and frustrations with. Because TSC affects everyone differently, we also encourage families to connect to organisations such as Epilepsy Foundation and Epilepsy Action or autism organisations and we provide training to their staff to ensure they are familiar with TSC.

With Clare StuartGENERAL MANAGER Tuberous Sclerosis Australia

Q What research is underway to find a cure?

A There is a very active worldwide research program in Tuberous Sclerosis. This includes research funded by the US government (over $6 million USD per year), pharmaceutical industry and patient organisations. This research program has uncovered new therapies for Tuberous Sclerosis and many targets for new therapies in the future.

In addition, as we understand more about the biological pathways involved in TSC we get closer to finding a cure.

An annual international research conference brings together the worldwide TSC research community and the theme of this year’s conference is from treatment to prevention and exciting plans will be made about taking discoveries from the lab into clinical trials. It is an exciting time for TSC research.

Tuberous Sclerosis Complex (TSC)TSC affects more than 2000 individuals in Australia and there is no known cure.

TSC is a genetic disorder that causes non-malignant tumours to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. It can cause epilepsy, developmental delay and autism.

It can be inherited from one parent with TSC or can result from a spontaneous genetic mutation. Children have a 50

percent chance of inheriting TSC if one of their parents has this condition.

The incidence and severity of the various aspects of TSC can vary widely between individuals—even between identical twins.

Many people with TSC are living independent, healthy lives and enjoying challenging professions such as doctors, lawyers, educators and researchers.

Contact Tuberous Sclerosis Australia on 1300 733 435 or visit www.tsa.org.au

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P 1800 251 497 F 1800 151 492 W teaching.com.au

Creating engaging learning environments for over 50 years

Tactile and sensory resources for kids of all ages and learning styles

The Jennswing® and JennSwing Cubby II® offers children with special needs the chance to experience the joy and excitement of swinging in the park or at home. Offering a safe, comfortable ride, and most importantly giving these children the opportunity to enjoy the relaxing and simple pleasure of swinging that we all once enjoyed as kids growing up!

JennSwing® semi-reclined design offers upper and lower body support with added leg rest. The arm rests provides lateral support. Includes an easy adjustable five point safety harness that secures the child by both shoulders and there waist.

Providing safe, Adaptive swing seats designed for children with mild to severe special needs or physical disabilities.

Surpassing all ADA (American Disabilities Act) guidelines for playground equipment in public recreation applications and residential play settings.

www.jennswing.com.au

Customer Care 02 9833 4599 [email protected]

Australia

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24 AUTUMN 2015

WePlay Maze Balancing Board. $44.95

Available from Modern Teaching Aids www.teaching.com.au

The Giant Plastic Top – $154.95

80cm diameter. Available from Modern Teaching Aids – www.teaching.com.au

Disc ‘O’ Sit – from $56.95

Available from Windmill Educational www.windmill.net.au

Teeter Popper – $62.95

Available from Windmill Educational www.windmill.net.au

Special Needs Adaptive Swing – $995

Available from Awesome Playgrounds www.awesomeplaygrounds.com.au Step-A-Stones – $85

Available from Windmill Educational www.windmill.net.au

Nest Swing (Oval) – $165

Available from Awesome Playgrounds www.awesomeplaygrounds.com.au

CGROSS MOTOR SKILLS Products

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WePlay Balance and Coordination Kit $399.95

Available from Modern Teaching Aids – www.teaching.com.au

Home Therapy Play Gym – $2,299

Available from Awesome Playgrounds www.awesomeplaygrounds.com.au

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Everywhere you look there seems to be another professional weighing in on

our diets and the problems they could be causing – and to make matters even

more confusing, they often seem to contradict each other! We’ve stripped back the jargon; separated the wheat

from the wheatgrass, to bring you our beginner’s guide to allergies

and intolerances.

ESTABLISHED FOR OVER 30 YEARS

Suppliers of educational equipment, toys and resources for special needs, primary school, pre-school and playgroups.

MELBOURNE 591 Whitehorse Road, Mont Albert VIC 3127 (03) 9830 4336

ADELAIDE 252 The Parade, Norwood SA 5067 (08) 8332 5262

LAUNCESTON 256 Charles Street, Launceston TAS 7250   (03) 6334 9996

HOBART 243 Harrington Street, Hobart TAS 7000  (03) 6231 0499

www.windmill.net.au

ALLERGIES & INTOLERANCE’S

Cathy Love is an occupational therapist, coach and speaker who works with children, families and service providers to get brilliant outcomes for children with special needs.

● Family service coach – Working with parents to set goals, design great programmes, find and use funding and successfully manage their child’s team.

● Clinical supervision and workshops for therapists or teams, face to face or virtual.

● Paediatric Private Practice Business Coaching – Guidance to start, grow, run, or sell your private practice.

CONSULTING

Ph 0448 316 319www.nacre.com.au

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Asthma www.asthmaaustralia.org.au

Asthma is a chronic inflammatory disease that is either extrinsic (allergic) or intrinsic (non-allergenic). Allergic asthma is triggered by common allergens such as dust mites, pet dander, pollen and mould. Non-allergic asthma is caused by factors such as cold or exercise. Both types of asthma present similarly, however, with non-allergenic asthma, the immune system is not involved with the response.

The inflamed airways cause the bronchi (airway branches) to be more sensitive and reactive to asthma triggers (allergens, cold, viruses etc.) and the lungs to have more difficulty passing air in and out. These two secondary symptoms cause the tertiary symptoms of shortness of breath, coughing and wheezing.

Coeliac Disease

www.coeliac.org.au

People who have Coeliac Disease, have an immune system that reacts abnormally to gluten (a protein found in wheat, barley and rye). This causes damage to the small intestine. The intestine is lined with small ‘fingers’ called Villi. In people with Coeliac Disease these Villi become flattened and damaged, which means that nutrients cannot be absorbed properly into the bloodstream.

There is no cure but a gluten free diet is an effective treatment. It is very important to be properly tested as Coeliac Disease can cause autoimmune diseases, thyroid disease and cancer if left untreated. It is also important to note that you need to still be eating gluten when you are tested – so don’t self diagnose and treat before seeing your doctor!

ALLERGY vs INTOLERANCE: which one is it?It’s easy to be confused about whether your child may have an allergy or an intolerance, especially as the symptoms of both can appear fairly similar. The difference between the two is that an allergy is an immune response where as an intolerance is a chemical reaction. Typically an allergic reaction is fast – within 30 minutes – whereas an intolerance reaction may take up to 48 hours. Food intolerances do not cause severe allergic reactions (anaphylaxis).

ALLERGY explanationAn allergy is the overreaction of the body’s immune system to a protein. The immune system reacts to something that would usually be harmless as if it were toxic. These proteins can come from ordinary, everyday foods and from things like dust mites, pollen, animal hair/saliva or mould.

The symptoms of food allergy can be life threatening. Common symptoms include:• itching,burningandswellingaroundthemouth• runnynose• skinrash(eczema)• hives(urticaria–skinbecomesredandraised)• diarrhoea,abdominalcramps• breathingdifficulties,includingwheezingandasthma• vomiting,nausea.

INTOLERANCE explanationAn intolerance is the chemical reaction your body has to a food or foods. It is often difficult to find the cause as different people can tolerate different amounts of the same substance. Allergy testing will not show up intolerances. Food intolerance has been shown to cause conditions such as asthma, chronic fatigue and Irritable Bowel Syndrome (IBS).

Symptoms of food intolerance can include:• nervousness,tremor• sweating• palpitations• rapidbreathing• headache,migraine• diarrhoea• burningsensationsontheskin• tightnessacrossthefaceandchest• breathingproblems–asthma-likesymptoms• allergy-likereactions.

NORMAL

COELIAC DISEASE

*www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/food_allergy_and_intolerance

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Irritable Bowel Syndromewww.ibsdiets.org

Irritable Bowel Syndrome (IBS) is a generalised gut disorder. Symptoms include feeling bloated, stomach pain and either diarrhoea, constipation or both. It can be caused by an intolerance to certain foods, bad bacteria in the gut, overactive gut muscles, or stress and anxiety (or a combination of these). There is some new research suggesting that one cause may be the malabsorption of fermentable sugars (FODMAPs) in those with IBS. It is important to get a diagnosis from your doctor mainly to rule out other more serious gut conditions including Crohn’s Disease and Coelic Disease.

IBS cannot be cured but it can be well managed with dietary changes and/or medication. You should consult with a dietician before making any drastic changes to your diet.

Lactose IntoleranceLactose intolerance occurs when a person doesn’t have enough Lactase, the enzyme required to break down Lactose, which is the natural sugar found in dairy. Symptoms include bloating, gas, belly pain and diarrhoea.

Non-Coeliac Gluten Sensitivitywww.coeliac.org.au

Non-Coeliac Gluten Sensitivity is the name given to the condition suffered by people who have difficulty tolerating Gluten but don’t have the blood test results and intestinal damage to prove they have Coeliac Disease. People suffering from Non-Coeliac Gluten Sensitivity also tend to have a prevalence of non-GI symptoms like joint pain and brain fog. If you test negative for Coeliac Disease and Wheat Allergy then you may be suffering from Non-Coeliac Gluten Sensitivity.

Autoimmune DiseasesUsually the cells in one’s body very efficiently fight off bacteria and viruses but, in the case of an autoimmune disease, the immune system gets confused and begins to fight off it’s own tissue. The official line on this subject is that there is no cure but that the symptoms can be treated. New research and information has shown that something called ‘Leaky Gut’ could be the cause of autoimmune diseases and other allergies and intolerances. While the concept of Leaky Gut is recognised within the medical fraternity, you may need to cross over to alternative medicine for help (usually diet and supplement based) to cure it.

Usually the small intestine exhibits some permeability to allow nutrients through, but in the case of Leaky Gut, the gut is damaged and allows larger particles of food and bacteria into the blood stream. This puts pressure on the immune system and causes inflammation within the body.

There are up to 80 different types of autoimmune disease and they include: Multiple Sclerosis, Grave’s Disease, Type 1 Diabetes and Irritable Bowel Disease.

Eczemaallergy.org.au/patients/skin-allergy/eczema

It’s still not properly understood exactly why people develop eczema but it is known that if you suffer from eczema you are more likely to develop other atopic diseases such as hay fever or asthma, and develop food allergies. There is no cure for eczema but the symptoms can be managed.

People who have eczema have a skin barrier that doesn’t work properly, so the skin that is damaged loses moisture and allows irritants and allergens in. The irritation triggers chemicals that make the skin itchy, and when it’s scratched, it allows more chemicals to be released.

The following are known triggers of eczema – please see your doctor to discuss your or your child’s triggers as they are specific to each person and you don’t want to have to avoid things if unnecessary:

• Dryskin

• Scratching(nightglovesandclippedfingernailsmaybeneeded in young children)

• Viralorbacterialinfections

• Swimminginchlorinatedswimmingpools

• Playinginsandandparticularlysandpits

• Sittingdirectlyoncarpetsorgrass

• Inhalantallergens–worseningofeczemainspringandsummer may also be due to pollen sensitivity

• Foodintolerancestoartificialcolourandpreservativeinsome people

• Irritantssuchasperfumes,soap,chemicals,woollenorsynthetic fabrics

• Temperaturechanges(suchasheat)oroverlyheatedrooms

• Stress(thiscanmakeitworsebuteczemaisnotapsychological condition).

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Resourceswww.fedup.com.auSue Dengate runs the Food Intolerence Network, which provides independent science-based information about food intolerance and support for families using a low-chemical elimination diet free of additives, low in salicylates, amines and flavour enhancers (FAILSAFE eating).

www.shepherdworks.com.auDr Sue Shepherd developed the low FODMAP diet in 1999. She has proven, through her pioneering PhD research, that limiting dietary FODMAPs is an effective treatment for people with symptoms of IBS. The low FODMAP diet has been published in international medical journals and is now accepted and recommended as one of the most effective dietary therapies for IBS.

Wheat Belly Total Health by Dr William DavisThe driving theme in all of cardiologist Dr. William Davis’ books is self-empowerment, providing readers with powerful tools that cut through the misinterpretations, misconceptions, misleading marketing, and bad science that passes as nutritional and health information. Conventional nutritional advice has led the country, now the world, into record-setting epidemics of obesity, diabetes, and other ‘modern’ health conditions.

Primal Body, Primal Mind – Nora GedgaudasNora Gedgaudas is a recognised expert on what is popularly referred to as the ‘Paleo diet’ and is the author of the international best-selling book, Primal Body, Primal Mind: Beyond the Paleo Diet for Total Health and A Longer Life. She is also a highly successful experienced nutritional consultant, speaker and educator, widely interviewed on national and international radio, popular podcasts, television and film. She maintains a private practice in Portland, Oregon as both a Board-Certified nutritional consultant and a Board-Certified clinical Neurofeedback Specialist.

Allergies, Intolerances, Diseases, Disorders and DietThis is a very controversial topic at the moment. Television chef and nutritionist Pete Evens is leading the charge in Australia, promoting the virtues of the Paleo diet.

If you prefer to get your science from an actual doctor or scientist, there are plenty of industry professionals discussing the same topic and research as it comes to light. The discussion around sugar (including all grains) causing inflammation and therefore being the starting point for almost every major disease; and that we should ditch the refined carbs and increase our fat intake are the hot topics and certainly worth considering. Some popular books to start with are listed in the resources box.

Certainly, the idea that diet can assist in the management of allergies and intolerances is not new, and while the High Fat Low Carb and Paleo/Primal diets aren’t yet approved by the DAA, there are others worth chatting to your dietician about. If you wanted to go down the Paleo route, you may need to find a nutritionist that specialises in that type of diet.

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INTERNATIONAL Angelman Syndrome Day15 February 2015

Meagan Cross and daughter Molly

Finding a cure for Angelman Syndrome

in the next decade is a very real prospect.

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AUTUMN 2015 31

Foundation for Angelman Syndrome Therapeutics chairwoman Meagan Cross, who is leading the fight against the gene disorder that affects around 1500 Australians, says research shows that AS is a very treatable and even curable disorder.

“Unlike a lot of other disorders, even more common ones, we know the cause of Angelman Syndrome,’’ Meagan explains.

“The syndrome is caused by a single gene; UBE3A. We have been able to cure AS in multiple ways in the lab and with enough funding, we can bring these findings to the children who so desperately need them.”  

But, with any big research program comes the challenge of funding.

The third annual International Angelman Syndrome Day was held on February 15, harnessing people power to promote research and fundraising and also to remember the Angels’ no longer with us. Events were held across Australia to celebrate IAD, raising over $30,000 for the Foundation for Angelman Syndrome Therapeutics Australia (FAST Australia).

IAD events included a walk in Victoria and family gatherings in Brisbane, Sydney, Tasmania and South Australia. There was also a special visitor at the Sydney gathering – Karen Courtney, mother to Jai Courtney – actor and ambassador for Angelman Syndrome. Meagan says its a heartwarming outcome.

“It’s turned into a real online event where people who care for someone with Angelman Syndrome, yell all the great things from the rooftop but also shine a light to the sides of the syndrome that aren’t always talked about, the struggles of those affected – the seizures, the troubles with walking, sitting, eating and lack of sleep for example,’’ Meagan says.

Even a small contribution to the campaign has the capacity to make a big difference.

“If you see stories in social media such as this one, take the time to read; tell someone else about what you have read and of course make a donation if you can,’’ she encourages. 

“People often think that small donations don’t make a difference and don’t donate, however if we receive at $15 donation from everyone who ‘likes’ the Source Kids page, we could raise over $36,000 – a lot of smaller donations making a big difference.’’

Michaela Townsend with son Jake, Karen Courtney and Joanne Caracoglia.

Angelman Syndrome has devastating affects. Sufferers experience global developmental delays,

movement and balance issues, lack of speech, seizure disorders, severe cognitive impairment, feeding and sleep difficulties.

People living with AS require life-long care, intensive therapies and close medical supervision. AS is often misdiagnosed as Cerebral Palsy or Autism.

Early diagnosis is critical. Intensive educational and therapeutic programs, repetition, and environmental enrichment all help to enhance their lives significantly.

Despite their challenges, individuals with AS are renowned for their happy disposition and huge smiles. Their infectious laughter and emotions are expressed with every inch of their body, with hugs so sincere that they are rarely forgotten!

However, their happy, loving nature is often overshadowed by the overwhelming difficulties they, and their carers, face daily.

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32 AUTUMN 2015

Jake Townsend is a gorgeous six-year-old with a captivating smile: a smile that belies the true extent of his challenges.

The smile and happy demeanour are characteristics of Angelman Syndrome, which also include a short attention span, balance disorder, no speech, poor fine and gross motor skills, and the two biggest challenges for Jake at the moment - seizures and a sleep disorder.

Jakes mother, Michaela Townsend (who is also mum to William, 4 and Zoe, 2) describes Jake as ‘an amazing little boy who brings so many joys into our lives,’ but also wonders if other people will ever really understand how many little things he struggles with everyday and how that can affect both Jake and their entire family.

Jake goes to school and has swimming lessons but he requires assistance with almost everything he does. He needs help to dress, toilet, eat and when he’s walking on uneven surfaces. He doesn’t sleep through the night so Michaela sleeps with him to make sure no one else in the family is woken up during the night. He also needs constant supervision – especially as he bites his siblings in an attempt to communicate with them.

Michaela says that Jake having AS takes a toll financially, mentally, physically and emotionally on their family.

“Financially there are the added costs of therapies that are not covered by funding as well as equipment and specialised

services. It all adds up and it is never going away. Those costs will always be part of our lives and the big question is what happens when he is older and needs full time care when we are too old?’’

Michaela admits the mental strain of having a child with Angelman Syndrome is the most difficult demon to face.

“I have to wake up every day and remember that my child will never talk, never walk down the aisle, will always needs help with all parts of his day,’’ but this just serves to make her even more determined to help Jake: “I will spend my life trying to make Jake’s life easier. I want to work towards a therapeutic for AS. I want him to have a full life.’’

Case study

JAKE TOWNSEND

Below: Keith and Michaela Townsend with their children Zoe, William and Jake.

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AUTUMN 2015 33

“The world record was something I’ve been working on for quite some time now. So to be able to get it was fantastic.’’

Last year, Deon also won a bronze medal in the 1500m at the IPC’s World Championships in France and secured gold medals at the Australian Open Track and Field Championships in the AWD 800 and 1500 metres.

He’s been training hard and as we go to print, he is competing at the national athletics championships in Brisbane – winning gold in the men’s Ambulant 800m and Para men’s 1500m. His next challenge is the International Paralympic Committee World Championships in Doha in October.

While his main aim is to win gold, another world record is also on his hit list.

“The time from now to Doha will absolutely fly,’’ Deon admits.

“As far as training goes it will involve me completing the current Australian athletics season. Then I will start my preparations towards the world championships in October. Training throughout this time will involve me going to Flagstaff, Arizona, for some altitude training and then a few camps in warmer climates such as the Gold Coast and Portugal with the aim of a better acclimatisation to the Doha heat.’’

Winning gold at the Paralympic Games in Rio in 2016 with a sub-four minute time, is Deon’s long-term ambition.

His advice to other people with special needs is simple.

“Find something you’re passionate about and really work hard to achieve it,’’ Deon says.

“There are always people who will pull you down but use that to motivate yourself.’’

Deon Kenzie was born with mild Hemepledgic Cerebral Palsy, which affects the right side of his body.

The Tasmanian hasn’t let the disability stop him from achieving his dreams. In fact, the opposite is true – with the 18-year-old using negative feedback from critics to motivate him.

He competes in the 1500m and late last year he broke the world record for a T38 classification by nearly a second, with a time of 4:08.51 – a huge effort when you consider that his condition affects his ability to accelerate at the start of races and towards the end when the pace increases.

“I consider myself to be in a very fortunate situation where I still have good mobility and can perform most day-to-day activities just as well as most people,’’ Deon explains.

“When I was first introduced to Paralympic sport and started to become recognised for my achievements, I struggled to come to terms with people knowing about my disability.

“Being in high school at the time, this caused some rumours and also caused some people to make some rather nasty remarks towards me. I will admit that at the time this did impact on my confidence greatly, however, over time I changed my mindset and started to use this as a way of motivating myself to achieve in all areas of my life.’’

Deon started running six years ago as a means of getting fit and joined Mike Gunson’s training squad, ‘Gunnaz Runnaz’ on the North-West Coast, a year later.

“My main goal when I started running was to improve my level of fitness and to be able to outrun my competitors on the football field, however, my passion for running quickly grew and eventually became a larger focus of mine,’’ Deon says.

Deon Kenzie 1500m World Record Holder – T38

RUNNING FOR RECORDS

Australia’s athletics scene has a new world record holder who is inspiring children with a disability to strive for greatness.

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34 AUTUMN 2015

paper-driven and process-driven. We have started to make

changes to make it easier and more flexible.’’

Mr Bowen said trial participants were very much pioneers,

describing them as guinea pigs testing the scheme and building

the evidence base to improve the outcomes for the future.

One major change this year will be a reduction in the catalogues

of support from 600-odd items down to less than 20 items, to

simplify the planning process for agency planners, participants

and also for the providers who, Mr Bowen says, are struggling to

get invoices out under the existing system.

The assessment of participants is also being refined, he said.

“We never really had an assessment tool that has related well

back to the funding of the scheme,’’ he told the meeting.

“This was acknowledged right from the start. The Productivity

Commission prepared the blueprint for this scheme and

acknowledged that there was no assessment tool that would

work for everybody in all circumstances, and that the agency

would have to build one.

“We did not build one, but we found it wasn’t really working for

us or you, and it didn’t have any strong correlation back to the

funding.

“So what we have done is gone back to the basics of the funding

of the scheme, which is on a series of reference packages

Halfway through the trial of the National Disability Insurance Scheme (NDIS) and refinement appears to be the order of the day as the trial `guinea pigs’ provide feedback about its implementation.

NDIS CEO David Bowen said Commonwealth and State

governments have entered into bilateral discussions and over

the next 18 months will determine how the full scheme will look

and where the funding will come from.

The most recent NDIS figures for trial sites reveal there are

103 participants with approved plans in the ACT, 838 people

registered in Tasmania, 2648 in NSW, and 3318 in Victoria.

The scheme is set to be expanded in the coming years with a

full national rollout due by 2018-19, involving around 460,000

people and costing around $700 million per year to run.

Mr Bowen told a meeting of NDIS participants during a

roadshow meeting in January that the scheme is on budget and

within the funding envelope. However, he admitted there had

been concerns about the process.

“We are very keen to reflect upon those and make those

changes that are necessary,’’ Mr Bowen said.

“There is no doubt that some of those people who went through

the early stages of the process felt it was too bureaucratic, too

THE LATEST

THE NATIONAL DISABILITY INSURANCE SCHEME

Page 35: Source Kids Autumn Issue May 2015

AUTUMN 2015 35

in the community and that will assist in building communities, so

that is an important piece of work.”

He noted one positive accommodation example in the ACT.

“There is a block of units and they had three or four people with

a disability, each with a unit of their own. The other ones, they

rented out at below market rent to people within the community.

The tenants had to sign a good neighbour agreement and help

with things like shopping and cleaning for the people with a

disability as part of living within the block of units.’’

Mr Bowen also shared details of a number of positive programs

underway as part of the NDIS.

They included a pilot program for school children in Geelong

integrating government support provided under the umbrellas

of both the NDIS and Department of Education.

The efficiency and pricing of service providers was another key

issue to be addressed.

For more updates, visit the NDIS website www.ndis.gov.au

that the Productivity Commission built around 24 different

disability types using international classifications of function and

disability to identify seven domains of movement and reference

supporting those domains.

“And we thought, how can we rebuild those reference packages

to make use of more information that might be available about

a person to get a better handle on what is a reasonable and

necessary package.

“This is not moving towards impairment tables where you get

a number of dollars. The reference packages are a tool, but it

will still be a matter of taking into account all of those other rich

variables in people’s lives that will determine the level of need

and support and recognise that at changeover time.’’

Independence for those with a disability is a key goal and the

NDIS agency will soon release a paper focused on its role in

providing specialised housing support.

“The agency does not fund community housing. But it does

have funding included in the overall funding that is there to

assist in the provision of housing for people who have a need, a

more specialised housing need, as a result of their disability,’’ Mr

Bowen explains.

“It is not all about supported accommodation, houses, putting

people in them who have nothing in common other than a

disability. We want to look at housing options that place people

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36 AUTUMN 2015

How we manage that:

Joe is the full-time carer as the children have frequent hospital

and therapy appointments. We have to be organised – when an

appointment letter arrives the date is written on the calendar

straight away (otherwise it is forgotten). Joe and I work as a

team in all situations. We prioritise what is really important as

a family, this particularly applies to our limited finances. We

strive to have a strong family bond as we receive little outside

assistance.

Our favourite places to go as a family are:

• Thezoo(weallloveanimals)

• Thelocalswimmingpoolforswimminglessons.

Our favourite activities are:

• Goingtothelibrary

• Cuddlingandplayingwithourcatsanddog.

Our family consists of:

Joe and Jenny Woolsey (parents) and Melissa (13), Nick (10) and Jessica (7).

We live:

North of Brisbane in Queensland.

Our children are dealing with the following

disabilities/have the following

disorder/syndrome:

Melissa: Crouzon Syndrome, Hydrocephalus, Chiari malformation, toe anomalies, reflux.

Nick: Crouzon Syndrome, Hydrocephalus, toe anomalies, visually impaired, mild hearing loss.

Jessica: Down Syndrome, AVSD PDA congenital heart defect, speech and language delay, poor fine motor skills, mild hearing loss.

All three children see a team of specialists.

Profile

THE Woolsey Family

Our child is dealing with the

following disability:

Page 37: Source Kids Autumn Issue May 2015

AUTUMN 2015 37

The best/most useful advice we’ve been given:

“She is just a little girl so treat her like one” (from Jenny’s dad when Melissa was little).

And the most annoying/unhelpful advice:

You MUST breastfeed no matter what! (This is rubbish – if you can’t breastfeed or your baby can’t breastfeed, then the bottle is just fine).

This journey has taught us:

• Whoourtruefriendsare

• Patience

• Totrustinmedicalspecialistsexpertiseandknowledge

• TotrustinGodthateverythingwillbealrightintheend

• Tobeadvocatesforourchildren

• Tobeadvocatesforpeoplewithfacialdifferences and Down Syndrome

• Thatchildrendevelopattheirownpaceanditisbestnot to compare your child to others.

We would never manage without:

• OurfaithinGod• Eachother(JoeandJenny).

Products we love:

• Books:HowtoTrainYourDragonseries,Goosebumps, Dork Diaries, Diary of a Wimpy Kid, Christy Miller Series

• DVDs:mostchildren’sanimatedfilms,HowToTrainYourDragon series and animal documentaries

• Favouritecartoon:AdventureTime• Art:drawingequipmentandpaper• iPad• Toys:stuffedzooanimals,beadmazes,abacusanddolls• Sports:trampoline,scootersandskateboards• Music:iTunes,microphones,YouTubevideosetc.

People (or businesses) we love:

Dentist – Dr Hugh McCallum, Children’s Oral Health Service Brisbane/LCCH

Psychologist – Dr Bronwyn Massavelli, KCPsych

Speech Pathologist – Jan Brandon Private Practice

Plastic Surgeon – Dr Richard Lewandowski, Mater Children’s Hospital/LCCH

Neurosurgeon – Dr Robert Campbell, Mater Children’s Hospital/LCCH

Facebook – Our Faces Support, Australian Crouzon and Pfeiffer Syndromes Support Group, International Crouzon Syndrome Support Group, DSAQ Support Group, Special Needs Kids, Australia

Our biggest challenge is:

Getting the community to understand that our children are

not syndromes, they are Melissa, Nick and Jessica who just

happen to have a syndrome. They are children first and foremost

with their own talents, behaviours, likes and dislikes just as all

children have.

Best parenting tips:

• Don’tsweatthesmallstuff

• Don’thideyourchildrenwithspecialneedsaway–take

them out in the world and help them to live their life to their

full potential

• Seekouthelpifyouarenotcoping–itisokaytoadmityou

need it.

What is Crouzon Syndrome?

Crouzon Syndrome occurs when some of the bones of the skull and face fuse or close too early in utero. The syndrome affects the growth of the skull, eye sockets and upper jaw. Intelligence is normal.

Where to find out moreJenny manages three Facebook support groups, including:

Crouzon Syndrome Specific:

• InternationalCrouzonSyndromeSupportGroup

• AustralianCrouzonandPfeifferSyndromesSupport Group

Any Facial Difference:

• OurFacesSupportGroup(www.ourfacessupport.org.au)

Our Faces Support has been newly established for anyone who has a facial difference and needs friendship and support. 

Page 38: Source Kids Autumn Issue May 2015

38 AUTUMN 2015

Here are some key pointers to keep you well-tuned and keep muscular aches and pains at bay!

1 Regular sleep to allow time to rest, recharge and recover is ideal. Poor sleep is so common for carers of our children. If

respite is available from a service provider, extended family member or friend, don’t refuse.

2 Exercise is important. It is now thought that any exercise no matter how brief is valuable.

3 Being less sedentary, if you can’t fit exercise into your day, also has positive health benefits and helps control

musculoskeletal pain.

4 Avoid sustained postures for more than 30 minutes. Change position. Reverse the posture you have been in. Do some

stretches or easy arm movements like windmills or head turns.

5 Set up your car seat to ensure that your wrists can rest on the top of the steering wheel comfortably; your thighs

are supported by the seat and have two finger widths space between the front edge of the seat and the back of your knee; your lower back (lumbar) curve is well supported and your chin isn’t poked forward. This will help when you are a taxi service!

6 Meditation, relaxation, yoga or deep breathing exercises are fantastic ways to relax your muscles and allow them to

recover. There are many free examples available on the internet.

7When lifting try to keep your spine in a neutral position – that means keep the natural curves of your spine. Try to ensure

that your child or the object you are lifting e.g. a wheelchair, is close to you. Gently brace your tummy muscles by drawing your belly button towards your spine and try to use your legs to lift. Bend at the knees.

8 Consider how to minimise the amount of lifting you need to do. This may mean transporting your child in their wheelchair

from an earlier age – not always possible for families because of the expense of modified motor vehicles. Ramps to load wheelchairs into cars are a back saver.

9 The weight of equipment is also important to consider. As a physiotherapist I always consider who will be the family

member who will most often lift the chair. Can the wheels come off easily? Is the frame as light as it can be without compromising support? Are the push handles at the right height? What wheel drive and tyre type best suits the family’s lifestyle?

It is said that we are more likely to injure our back when lifting because we can’t see the crazy positions we put it in. Combine this with caring for a child with extra needs, being constantly time poor, exercising infrequently and most likely

chronic sleep deprivation and it’s no surprise that parents and care givers complain of back pain.

Lower back pain is not the only ailment common in families caring for a child with high physical, behavioural and/or medical needs. Our mid back suffers when we sit and lift, bend into a car to lift or sit leaning forward for prolonged periods. The rotator cuff muscles that support the shoulder can become injured or inflamed with repeated or awkward lifting of a child from a car seat, bath or chair. Twisting transfers when your foot is planted on the ground is a recipe for disaster for your knee. Some injuries are unavoidable; recently one of my patient’s mums was injured when a therapy horse trampled her foot. Back, neck and shoulder pain, however, adversely impact on your quality of life and wear you down.

live, learn and play Maximise your child’s

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Page 39: Source Kids Autumn Issue May 2015

AUTUMN 2015 39

10 Swivel seats that can come out of the car and close to ground level are becoming more common to allow easier transfers

with greater independence for people with physical needs.

11 If your child can assist in getting into a booster seat, make sure they do by using a footstool for them to climb in and out

of the car (that can be stored in the foot well behind the front seat). Often repositioning the booster seat into the middle of the back seat helps. Make sure the front seat is well forward to give you room to move when getting a child into the back seat.

12 Cars with sliding side doors are great for easier access when still using a booster seat for younger or smaller children.

Place one foot in the car and one on the road or gutter. Face your child and lift them into the seat.

13 Maintaining or gaining the ability to take some weight for transfers (if able) is vital. This skill has positive health benefits

for your child and helps to minimise the wear and tear on your back and joints.

14 Where possible try to access height adjustable and mobile equipment: change tables, beds, shower chairs.

15 Use a shower when you can, rather than the bath so that you are not lifting from a bent position. Showers often have easier

access as well. It helps to transfer children in and out of shower chairs outside the shower.

16 High backed bumbo seats are great for younger children at shower time. They provide good support, are relatively

inexpensive and easy to clean.

17Try not to twist and lift at the same time. Moving your feet as you turn helps to avoid this action.

What you need• Generalfitness

• Abdominalmuscle,bottom and leg strength

• Timetocompleteasafetransfer

• Assistance:fromyourchild,from another carer or from transfer aids

Your team• ConsultwithyourphysioandOTtoensurethat

appropriate techniques and equipment are used in a timely manner to prevent injury

• Yourtherapistcanorganiseequipmenttrials

• Equipmentcanbeprescribedbyyourtherapistsundervarious funding options

• Anadditionalcarerifrequired

Be ready• Checkyourposture• Bendyourneedsandbraceyourabdominals• Haveyourtransferequipmentreadyifnecessary• Keepyourchildcloseduringassistedtransfers• Avoidtwisting

The space• Removeobstacles–keepuncluttered

• Useclearinstructionstoyourchildand/oranothercarer

• Anglemobilityaidsandequipmenttoreducethe distance between them. Always step or turn to your child’s good side

Transfer aids/equipment to consider• Transferbelt• Slidesheets• Adjustableheightbed• Slideboard• Hoistandsling• Properlyinstalledhandrails• Showerchairs,wheeledtoilet/showercommodes• Swivelseatforcars• Modifiedvehicleforwheelchairaccess.• Hoblessshower

18 Avoid bending and twisting also.

19 Use another person, a sliding board or a hoist when you can.

20Try to time care that requires lifting when two adults are home to help.

If you do injure your back, it is best to keep moving as much as the pain will allow. Take paracetamol as required. A recent Australian study has shown movement within pain limits is the best way to manage an acute back injury. If your pain is not improving after 5-7 days it is important to seek medical advice.

Article by: Melissa Locke FACP, APAM, Specialist Paediatric Physiotherapist, Movement Solutions – Queensland www.movementsolutions.com.auTips by: Debbie Evans, Executive Director and Clinical Director Physiotherapy at Therapies for Kids – Sydney www.therapiesforkids.com.au

Therapies for Kids are specialists in providing ‘tailor-made’ programmes that are appropriate for each child’s individual needs and which help to improve their fun and function in everyday life.We have a holistic and transdisciplinary approach to treatment, which is delivered in our all-abilities gym, resulting in increased community participation.

37 Nelson St, Annandale NSW 2038 • (02) 9519 0966 • www.therapiesforkids.com.au

Where therapy is not hard work – it’s fun!

PAEDIATRIC PHYSIOTHERAPY, OCCUPATIONAL THERAPY, SPEECH PATHOLOGY & PODIATRY

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40 AUTUMN 2015

There are three areas of concern:

• Childrenwhoarenotbeingrecognisedasgifted;

• Childrenwhoaremisdiagnosedashavingadisabilitywhereinfact they are gifted; and

• Childrenwhoaregifted,whoalsohaveadisability.Thesechildren are known as ‘Twice Exceptional’.

The gifted and overexcitabilitiesThe Polish psychiatrist and psychologist, Kazimierz Dabrowski, (1902-1980), developed the concept of ‘overexcitabilities’ (OEs) in the five areas of: psychomotor, sensual, imaginational, intellectual and emotional to describe the ways in which gifted people react more strongly, for a longer period than normal, to what seems to be very innocuous nervous system stimuli.

Debrowski’s theory explains the increased intensity gifted people feel and with which they experience life. Most gifted people will experience at least one of these OEs and will have a dominant one depending on the person.

PsychomotorThe primary sign of this intensity is a surplus of energy. Children with a dominant psychomotor overexcitability are often misdiagnosed with ADHD since characteristics are similar.• Rapidspeech • Impulsivebehaviour• Competitiveness • Compulsivetalking• Compulsiveorganising • Nervoushabitsandtics• Preferenceforfastaction • Sleeplessness

and sports• Physicalexpressionofemotions

It’s easy to assume that if being clever is ‘good’ then being gifted must be even better but the reality isn’t as easy as that. Learning to function in a mainstream world can be just as challenging for someone with an IQ thirty points over the average as with someone thirty points below.

An Intelligence Quotient (IQ) is a score derived from one of several standardised tests designed to assess human intelligence. An IQ can tell us what someone’s learning potential might be. The average score is 100, with people who have a score of 70 or less considered intellectually disabled and people with a score of 130 and above considered gifted. The IQ is merely an assessment on potential – gifted children need to be discovered so that they can be educated appropriately to reach their full potential.

Currently, children are not routinely tested and are assumed to be average unless otherwise showing outward signs of difference. Children who are more extremely on either side of the scale may have been diagnosed earlier but often it is left to school to flag any problems – particularly ones related to behaviour. The difficulty here is that because of the complexities of ‘giftedness’ children can be (and are) easily misdiagnosed and do not receive the educational support they need and deserve.

Gifted, misdiagnosed, or TWICE EXCEPTIONAL Its not as easy as 1,2,3

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AUTUMN 2015 41

Emotional The primary sign of this intensity is exceptional emotional sensitivity. Children with a strong emotional overexcitability are sometimes mistakenly believed to have Bipolar Disorder or other emotional problems and disorders. They are often the children about whom people will say, “He’s too sensitive for his own good.”• Extremesofemotion• Anxiety• Feelingsofguiltandsenseofresponsibility• Feelingsofinadequacyandinferiority• Timidityandshyness• Loneliness• Concernforothers• Heightenedsenseofrightandwrong,ofinjusticeand

hypocrisy• Strongmemoryforfeelings• Problemsadjustingtochange• Depression• Needforsecurity• Physicalresponsetoemotions(stomachachescaused

by anxiety, for example)* Definitions and characteristics lists taken from Gifted Children Expert, Carol Bainbridge. Article: Dabrowski’s Overexcitabilities or Supersensitivities in Gifted Children.

Gifted with Sensory Processing Disorder (SPD)Paula Jarrard, MS, OTR, a doctoral candidate at Rocky Mountain University of Health Professions studied the relationship between SPD and gifted children. She said “The ‘double-edged sword’ of giftedness often bestows, among other features, a global heightened awareness to sensory stimulation, an endowment of amplified mental processing speed and attention capacity, and unusual challenges with frustration, pain, noise, and emotional hypersensitivity”.

Jarrard learned from her review that up to as many as one third of all children who are gifted will also have SPD, which is much higher than the five per cent found in the general population. She also found that ‘the higher the level of giftedness in a child, the more likely that introversion is linked with increased responsivity to pain, sound, touch, and smell’. So it seems that the quiet ‘clever kid’ in the corner stereotype of a gifted child could actually be a child struggling with SPD.

SensualThe primary sign of this intensity is a heightened awareness of all five senses – sight, smell, taste, touch, and hearing. Children with a dominant sensual overexcitability can get sick from the smell of certain foods or as toddlers will hate to walk on grass in their bare feet. The pleasure they get from the tastes and textures of some foods may cause them to overeat.

• Appreciationofbeauty,whetherinwriting,music,artornature – includes love of objects like jewellery

• Sensitivetosmells,tastes,ortexturesoffoods• Sensitivitytopollution• Tactilesensitivity(Botheredbyfeelofsomematerialsonthe

skin, clothing tags)• Cravingforpleasure• Needordesireforcomfort

IntellectualThis intensity is the one most recognised in gifted children. It is characterised by activities of the mind, thought and thinking about thinking. Children who lead with this intensity seem to be thinking all the time and want answers to deep thoughts. Sometimes their need for answers will get them in trouble in school when their questioning of the teacher seems to be disrespectful or challenging.

• Loveofknowledgeandlearning • Deepcuriosity

• Loveofproblemsolving • Avidreading

• Askingofprobingquestions • Theoreticalthinking

• Analyticalthinking • Independentthinking

• Concentration,abilitytomaintain intellectual effort

Imaginational The primary sign of this intensity is the free play of the imagination. Their vivid imaginations can cause them to visualise the worst possibility in any situation. It can keep them from taking chances or getting involved in new situations.

• Vividdreams • Fearoftheunknown• Goodsenseofhumour • Magicalthinking• Loveofpoetry,musicanddrama • Loveoffantasy• Daydreaming • Imaginaryfriends• Detailedvisualisation

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42 AUTUMN 2015

While seeming so similar, it is important to note that not all gifted children have Asperger’s

Syndrome – and that not all children with Asperger’s Syndrome are gifted. Differentiating between the two is important to ensure the child has the appropriate support to succeed.

Twice ExceptionalThese children are gifted and have a

learning disability. A lot of children in this category are missed and overlooked

for special education as their strengths and weaknesses can balance each other out, they

appear average and don’t raise any flags. This provides a huge disservice to these children, as they should be extended in gifted programs while receiving learning support to assist them with their difficulties.

Below are some markers of gifted students with learning disabilities• Highabstractreasoningability• Goodmathematicalreasoningability• Keenvisualmemory,spatialskills• Advancedvocabulary• Sophisticatedsenseofhumour• Imaginativeandcreative• Insightful• Exceptionalabilityingeometry,science,arts,music• Goodproblem-findingand-solvingskills• Difficultywithmemorisation,computation,phonics,

and/or spelling• Distractibilityand/ordisorganisation• Supersensitivity• Perfectionism• Graspofmetaphors,analogies,satire• Comprehensionofcomplexsystems• Unreasonableselfexpectations• Often,failuretocompleteassignments• Difficultieswithsequentialtasks• Widevarietyofinterests(Baum, Owen, & Dixon, 1991; Silverman, 1989)

Gifted and ADHDIf you take a look at the table above, you will see that the similarities between a child with ADHD and a gifted child who is bored are remarkably similar. Children who are not identified as gifted – or who have been identified but are not adequately challenged – run the risk of displaying behaviours that emulate ADHD.

Questions to ask in differentiating between giftedness and ADHD• Couldthebehavioursberesponsesto

inappropriate placement, insufficient challenge, or lack of intellectual peers?

• Isthechildabletoconcentratewheninterestedintheactivity?

• Haveanycurricularmodificationsbeenmadeinanattempttochange inappropriate behaviours?

• Hasthechildbeeninterviewed?Whatarehis/herfeelingsabout the behaviours?

• Doesthechildfeeloutofcontrol?Dotheparentsperceivethe child as being out of control?

• Dothebehavioursoccuratcertaintimesoftheday,during certain activities, with certain teachers or in certain environments?

Dual Exceptionalities By Colleen Willard-Holt — Council for Exceptional Children (CEC), Division of Learning Disabilities (DLD)

It is essential when your child is diagnosed, to consult a professional who is experienced in dealing with gifted children and those who are ‘Twice Exceptional’, so they can ascertain a correct diagnosis and your child can be appropriately assisted in school.

Gifted and Asperger’s SyndromeWhile similar in presentation, being gifted and having Asperger’s Syndrome are two different conditions, one stemming from the isolation caused by knowing so much more than their peers and the other being a neurological condition.

Characteristics of students with ADHD Characteristics of gifted students who are boredPoorly sustained attention Poor attention and daydreaming when bored

Diminished persistence on tasks not having immediate consequences Low tolerance for persistence on tasks that seem irrelevant

Often shift from one uncompleted activity to another Begin many projects, see few to completion

Impulsivity, poor delay of gratification Development of judgment lags behind intellectual growth

Impaired adherence to commands to regulate or inhibit behaviour in social contexts

Intensity may lead to power struggles with authorities

More active, restless than other children High activity level; may need less sleep

Often talk excessively Difficulty restraining desire to talk; may be disruptive

Often interrupt or intrude on others (e.g. butt into games) Question rules, customs, and traditions

Difficulty adhering to rules and regulations Lose work, forget homework, are disorganised

Often lose things necessary for tasks or activities at home or school May appear careless

May appear inattentive to details Highly sensitive to criticism

Highly sensitive to criticism Do not exhibit problem behaviours in all situations

Problem behaviours exist in all settings, but in some are more severe More consistent levels of performance at a fairly consistent pace.

Variability in task performance and time used to accomplish tasks. (Cline, 1999; Webb & Latimer, 1993)

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AUTUMN 2015 43

control herself. We found it hard to go out as a family, she wasn’t keeping herself safe and life was just miserable for everyone.

At school, they saw her as a very quiet, shy little girl who didn’t really speak much; at home she was the complete opposite. She was always completely disorganised at school and home, she’d forget to do routine activities like getting dressed or brushing teeth. Some mornings, she couldn’t think clearly enough to even remember to chew breakfast due to being so distracted or having so many thoughts in her head.

Was there any pattern as to how/when you were seeing them?

Her anxiety behaviours, moods and frustration levels changed every school holiday. The worst day tended to be the day before she was due back at school. ADHD behaviours were constant though more pronounced on a school morning.

How did she manage at school socially?

She had a few friends but tended to latch onto one person. She was well liked, but was always held back by her anxiety. She would always be on the edge of a group looking like she wanted to join in. When she invited friends to tea, they were often amazed at how loud and energetic she was.

How did she manage academically? Was she appropriately challenged?

At one school, she was skipped a year and had pull outs to year six for Maths and English; this worked well, but as a year two child, socially it was different and as the school only went to year six, we needed to explore what might happen in the future years at that school.

We then moved to a new school that looked to challenge her by offering so many other classes, extra curricular activities and opportunities. She was put back in with her age peers which worked for a few terms and then the behaviours started again. She became switched off, phobic of going into school, she started to underperform and her frustrations at home got louder and louder. We realised she was getting easier and easier work (grade level) but was so switched off by the lack of challenge that she’d spend the day controlling her frustrations and then letting it all out at home. We had had several meetings with the school about this.

What made you decide to home school?

It was our final option; as a family we couldn’t continue with the meltdowns and unhappiness in her. We couldn’t see her mute at school and with anxiety levels constantly rising. We researched home schooling, then made the decision. The day we told her that she didn’t ever have to go back to school was a great day; she looked so much happier and relaxed within a few minutes.

Has this been a good move?

Yes, I don’t regret it for a minute. Amelie is adamant that she will never return to school and right now, I don’t see how she could return. She is a year five pupil working at the level of year 10 children. She can work on her own projects, work at her pace, go to activities and workshops and follow her own interests. It took a few months before we noticed a difference in her, but general comments show that she is much more relaxed and happy. She is now eating well, sleeping well and the frustrations and meltdowns have gone from daily to once every few weeks. As a family we are happier and more relaxed.

Any tips or advice for our readers?

For a gifted child; follow their lead in their interests, read a lot to them, play a lot and give them as many different experiences as possible. For a Twice Exceptional child; if you think there is something not quite right, get it checked out, don’t just hope the issue will go away by itself.

*names changed

Who is in your family?

We have myself (a SAHM though previously a teacher), my husband (an IT Consultant), Amelie (10) and Patrick (5).

How were you initially aware that there was something ‘unusual’ about your child?

Gifted wise…we were always told how alert Amelie was, even in the hospital, nurses were commenting on how awake she was. Her physical milestones of sitting and walking were very early (15 weeks and eight months respectively). By the time she was 12 months old, she was picking out and naming letters, by 17 months she was picking words she recognised out of books. She loved puzzles and could do 48 piece puzzles by 18 months of age. By two and a half years she was reading chapter books and enjoying basic maths. She spoke early and was using long sentences before she was two, but with poor articulation.

Quirk wise, even though she was talking in long sentences in the home, it was rare she spoke in public or even outside of the immediate family. She was always physically very active and seemed to need a lot of mental stimulation, otherwise she wouldn’t sleep. We would walk her a mile every evening from the age of 12 months so that it might help her sleep. She was a fairly calm baby and toddler and we seemed to escape the ‘terrible two’s’ stage. We noticed that she had some sensory issues with food and textures.

When did you have her formally tested? She was tested initially at the age of five as she still wasn’t talking in public, we wanted to see if there was a discrepancy between her spoken and receptive language. She scored in the gifted range despite not speaking very much. The testing gave us no further information and we had no idea what to do next so I read a lot of help books and researched online. By the time she was seven, she was exhibiting a lot of other behaviours (anger, rage, anxiety, frustrations, hyperactivity (mental and physical), which is when we saw a different Educational Psychologist. It was then that ADHD was mentioned along with Anxiety and possible ASD. She also scored far higher in the IQ tests than we had imagined.

What results did you get?

After we saw the results of the WISC, we realised she had ceilinged many of the subtests, so we used extended norms to calculate her IQ. We also saw some big discrepancies in some sections which indicated possible ADHD. We then went to see an ADHD Consultant who eventually diagnosed the ADHD along with an Anxiety Disorder; he explained that she was a very complex little girl especially given her high IQ.

What were you expecting?

We were expecting her to score in the gifted range, but her actual number was far higher than I expected and it put her in the profoundly gifted range (99.99+%). For the ADHD, it was something we’d never really considered but all the pieces fell into place; the need to move, the need for mental hyper activity, the over emotions, the poor short term memory, the distractibility, the disorganisation…it all made sense.

What kind of behavioural quirks were evident?

Before we had the second testing, we had a child who was so frustrated and angry. She would have violent meltdowns after school, life was spent walking on egg shells not knowing when she would be unable to

TWICE EXCEPTIONAL The Smith family

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44 AUTUMN 2015

So, you trained as a teacher and earnestly desired to impart your hard earned knowledge to eager young minds. You were determined to make a difference. The children will love you, you thought. But as time has gone on, perhaps your rose coloured glasses have fogged a bit. You now have thirty students, four with ADHD, one with a previous diagnosis of POD NOS before it became ASD, and there is ODD, dyspraxia, dyslexia and dyscalculia thrown in for good measure. Each year as you get your class lists you get out your dictionary and try to decipher the hidden messages in acronyms and big words and this tight feeling begins to crush your lungs. How on earth are you going to teach these children when you have no idea of the issues they are facing? And then, to top everything off, in walks a child with Asperger Syndrome. You almost wished he behaved like Rainman, or Sheldon from Big Bang theory as then you might have some idea of what you are dealing with. But he’s nothing like them, or any other child you have met. He’s bright, but fails his tests; he loves art one day, and cries during art the next; he is open and friendly and often funny, yet other kids bully him. How are you going to get him out from under the table long enough to teach him anything?

This is not the beginning of a horror story. It is daily life for teachers all over the world. I taught full time and part time for 20 years. I remember how year after year, more and more children with needs I did not understand came through the door. I have also written about Asperger Syndrome for 15 years and talked to many parents and teachers about the needs of the child in the classroom. So I put these two areas of expertise together and came up with a book I wish I had owned many years ago.

First of all, I wanted a book that a teacher could use without having to read every page. After an exhausting day with a room full of children and quite a few needy parents to deal with, there are papers to mark, reports to write and lesson plans to create. Oh, and somewhere in there you have to fit in a social life and remind your family you still exist. What about that one child, in one class, with a specific problem you may never come up against again. Research that? Forget it!

I knew that for any book to be useful, it had to be easy to navigate, simple to understand and be filled with tips that are workable in the average classroom. I also hope that little things might stick in the mind of a teacher that will unlock ways to help their students. For these reasons I have set out the book with a description of many of the most commons issues children with Asperger’s face, such as being literal thinkers, understanding the perspective of others and adapting to change, plus I included a large section on sensory issues. Then I added an explanation from the child’s perspective, which is often vastly different from a parent or teacher’s perspective. I followed that up with suggestions on how to help the child in the classroom and finally a section on how the teacher can help the parents support the child at home.

Knowing why a child behaves in a certain way is like a breath of air for a struggling parent or teacher. It gives them a key to unlocking this puzzle that has been confusing them for years. Likewise to finally understand why a particular student does not respond to ‘tried and true’ strategies is liberating.

THE ESSENTIAL MANUAL FOR

ASPERGER SYNDROME (ASD) IN THE CLASSROOM

Why every teacher should own this book

The Essential Manual for Asperger Syndrome (ASD) in the Classroom: What Every Teacher Needs to Know by Kathy Hoopmann is available from Footprint Books www.footprint.com.au

Buy from Footprint Books and receive 15% off plus free delivery. Use code EMAS15. Valid until midnight 20 May 2015.

WORDS | Kathy Hoopmann

Page 45: Source Kids Autumn Issue May 2015

AUTUMN 2015 45

The essential manual for Asperger Syndrome (ASD) in the classroom

Written by Kathy Hoopman

Perfect for time-poor teachers, Kathy Hoopmann’s essential handbook is an easy-to-navigate resource that promotes a positive learning environment in which students with Asperger syndrome (ASD) can thrive. Kathy’s unique ability to explain the ASD mind-set shines through, as her concise descriptions reveal how to recognise and develop the child’s strengths to the fullest potential whilst guiding and mentoring through areas of difficulties.

Full of effective and innovative strategies, the book covers areas such as meltdowns, forming friendships, literal thinking and speaking, and the overwhelming influence of sensory sensitivities. Activities to help explain the child’s behaviour to other students, which fosters understanding and acceptance, are also included. A ‘Home Link’ section adds vital information about how to work with parents and other caregivers to create safe, loving and fun environments for the child at home and at school. With illustrations throughout, this book will be of immeasurable value to anyone who is working in a classroom setting with children with ASD.

Enter at www.sourcekids.com.au/competitions to win one of two copies of this fantastic book.

footprint books

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parents carers families teachers professionals

Here are just a few tips:

1 Set the tone of acceptance and respect in your class, and your students will follow.

2 If a child appears naughty, take the time to ask her why she behaved that way. Her answer may surprise you.

Perhaps she did not hear you clearly, or at all, or took your instructions literally.

3 Stock up on items that can help your student relax; e.g. pillows to sit on, earphones for when the class gets too

loud; fidget toys to assist with those with body awareness issues, a space a child can retreat to when it all gets too much.

4 Take the time to demonstrate instructions, not just speak them.

5 Write up a class schedule on a board each day so the students know what subject to expect next.

6 Try not to be offended if the child corrects your mistakes. He is not being arrogant but is genuinely trying to be

helpful.

7 Be aware that children on the spectrum do not read body language well. If you are showing anger or impatience by

crossing your arms and frowning, then it’s time for you to change. State your feelings clearly and the child will respond.

8 Listen and be fair, especially when a child is accused of hurting other students or breaking rules. The sly bully

knows how to set the child up for blame.

9 Don’t give homework. Okay, I know this is unrealistic but it would make a world of difference to the child and his

family. There is a whole chapter on how to alleviate the stress of this prescribed activity.

10 Never forget that the child you are teaching is loved by someone. This one should never be forgotten. Ever.

Does it seem too good to be true? Will simple things like these make a difference in your class? Well, there are hundreds of other tips in the book too. But in essence, understanding your students and treating them with respect is the strong foundation for a good year in the classroom. This book will help with understanding. The respect is up to you.

Book Review

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46 AUTUMN 2015

MayMiracle Month of MayHeld by the Miracle Babies Foundation, this month raises awareness and funds for premature and sick newborns, their families and hospitals that care for them. www.miraclebabies.org.au

5k a day in MayTake part in the 5k a day in May to raise awareness and much-needed funds for asthma research. During the month of May you can walk, run or swim five kilometres every day. Register for your challenge as an individual or a team and support the Asthma Foundation NSW.www.5kadayinmay.com.au

Royal Queensbury ChampionshipEach May a select few of Perth’s corporates bravely jump into the boxing ring in Crown’s Grand Ballroom, before 1250 screaming spectators and box on! This is all in the name of charity as funds raised support ToyBox, a group dedicated to supporting Australia’s sick and needy children with vital equipment.www.everydayhero.com.au/event/rqcc2015

1Starlight Day Race to ShineThis amazing race style event will see the cities of Sydney, Melbourne, Brisbane and Perth transformed into a giant, interactive game where teams follow clues and complete challenges in a Race to Shine the brightest for sick kids across Australia.www.starlightracetoshine.org.au

1-7Bike 4 BurnsThis event is a charity bike ride that raises funds to further life-changing research into childhood burns, something very close to the hearts of all firefighters. In its 9th year, Bike 4 Burns firefighters will push themselves through 800km in seven gruelling days to support the Children’s Hospital Foundation.www.wonderteam.com.au/event/bike4burns2015

3Two Feet and a HeartbeatStep out with friends and family and take part in this charity walk to help beat childhood heart disease – the leading cause of infant death in Australia. The walk will take place in seven locations across Queensland including Brisbane, Cairns, Gold Coast, Mackay, Sunshine Coast, Toowoomba and Townsville.www.twofeetandaheartbeat.org.au

What’s on Calendar3Port Pirie Fun Run/WalkSupport Make-A-Wish and take part in the 5km or 11km fun run or walk! There are race categories to suit all ages and great prizes to be won. From 7.30am at the Old Quarry, Port Germein Road, Port Pirie SA.www.everydayhero.com.au/event/portpiriefunrun

3-9 Tourette Syndrome Awareness WeekThis week aims to spread knowledge of what Tourettes is, as well as ask for understanding and acceptance in the community to undo the social stigma created by misinformation.www.tourette.org.au

6World Asthma Daywww.nationalasthma.org.au

10Mother’s DayA celebration of all mothers out there!

11-17National Volunteer WeekThe largest celebration of volunteers and volunteerism in Australia, highlighting the important role and saying thank you to the more than six million Australians who volunteer.www.volunteeringaustralia.org

15-21National Families WeekCelebrate the meaning of family and make the most of family time.www.familiesaustralia.org.au/familiesweek

17Sydney Morning Herald Half MarathonTake in the harbourside icons such as the Opera House, Harbour Bridge and Pyrmont Peninsula. The 21.1km course can be completed as an individual or teams.www.smhhalfmarathon.com.au

17-23Variety NSW AHA BashThe annual Bash is a seven-day motoring event through regional NSW that brings together people from all background working towards a common goal. Funds raised are distributed along the way to help Aussie children who are sick, disadvantaged or have special needs.www.variety.org.au/NSW/events/newcastle-events/newcastle-bash

17-23Food Allergy Awareness Weekwww.allergyfacts.org.au

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28Stay in Bed DaySleep in on Sunday 28 June to help raise awareness of Mitochondrial Disease and help raise funds to find a cure. All you have to do is sleep in, how easy is that!www.stayinbedday.org.au

29 June – 5 JulyBravehearts 777 MarathonThe Bravehearts 777 Marathon – 7 marathons in 7 states in 7 days, is a heart-pounding, exhilarating challenge which will see participants run marathons in Perth, Adelaide, Melbourne, Hobart, Canberra, Kingscliff and the Gold Coast. Funds raised go to Bravehearts.www.braveheartsadventures.org.au

July

4-5Gold Coast Airport MarathonChallenge yourself and take on the flattest, fastest and most scenic courses in the world. Held on July 4 and 5 on the Gold Coast this event includes the marathon, half marathon, wheelchair 15km, 10km run, 5.7km challenge and a 2km or 4km junior dash.www.goldcoastmarathon.com.au

6-12Sleep Awareness Weekwww.sleephealthfoundation.org.au

26The Age Run MelbourneRun Melbourne starts from Federation Square and includes a 3km kids run, 5km walk/run, a 10km run or a half-marathon challenge. Nominate the charity or cause you want to raise funds for with over 450 charities to choose from.www.runmelbourne.com.au

22-2324 hr Treadmill ChallengeOver 1000 participants will come together and keep the treadmills in continuous motion for 24 hours. The around-the-clock activity steps up a notch after dark by going bright and neon at night. Funds raised will go to the Very Special Kids Hospice in Victoria.www.vsktreadmill.org.au

25-31Spinal Health Weekwww.chiropractors.asn.au

31Balmoral BurnThis is the toughest 420m uphill race in Australia organised by the Humpty Dumpty Foundation and held in Mosman, Sydney. Funds raised help provide support for children’s services such as life-saving medical equipment for hospitals and health service centres across Australia.www.humpty.com.au

JuneCongenital CMV Awareness Monthwww.cmv.org.au

Starlight Smile ProjectHelp Captain Starlight bring smiles to sick kids in hospitals by raising smiles at home and school. The project gets children involved in performing kind acts – doing things that bring a smile to people’s faces. Each kind act will earn them a smiley star and the children’s acts will be sponsored by family and friends.www.starlightsmileproject.org.au

9Gold TelethonThe major fundraiser for the Sydney Children’s Hospital Foundation.www.goldtelethon.org.au

14Brisbane Times City2SouthTake on the 5km or 14km course in Brisbane – elite runners, joggers and walkers from around Australia will participate. Run for your cause and choose from more than 800 charities to support.www.city2south.com.au

What’s on Calendar

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48 AUTUMN 2015

AIDS AND EQUIPMENT

Abilitations PO Box 210 Forster NSW 02 6555 9877 www.abilitations.com.auAchievable Concepts 5 Collins Close Caves Beach NSW 0490 517 960 www.achievableconcepts.com.au Calming Kids 4 Burgess Street Hamersley WA 0439 958 048 www.calmingkids.com.au DoAbility Kids 53 Stubbs Street Kensington VIC 1300 122 355 www.doabilitykids.com.au JennSwing Australia 77 Glossop Street St Marys Sydney NSW 02 9833 1500 www.jennswing.com.auKorthotics 5/10 George Street Leichhardt NSW 02 9569 3672 www.korthotics.com.au Medifab 26 Pardoe Street East Devonport TAS 1300 543 343 www.medifab.com.au Milestones Therapy PO Box 1387 Macquarie Centre PO NSW 0434 853 245 www.milestonestherapy.com.auPME Group 1300 131 884 www.pmegroup.com.auProOptics 7 George Street Sydenham NSW 02 8007 6041 www.prooptics.com.au Special Needs Solutions 12 Everest Drive Southport QLD 07 5527 9794 www.specialneedssolutions.com.au Springfree Trampoline PO Box 819 Buderim QLD 1800 586 772 www.springfreetrampoline.com.au R82 PO Box 284 Botany NSW 02 8213 6666 www.r82.com.au

CLOTHING AND ACCESSORIES

Little Big Feet 6/2069 Moggill Road Kenmore QLD 07 3378 5935 www.littlebigfeet.com.au Little Toggs 10 Selina Place Glenwood NSW 0426 972 914 www.littletoggs.com.auWonsie Bodysuits Sydney NSW 0409 309 129 www.wonsie.com.au

HEALTH AND NUTRITION

Bellamy’s Organic 52-54 Tamar Street Launceston TAS 1800 010 460 www.bellamysorganic.com.auDr Salt 18/427 Hampton Street Hampton VIC 03 9598 8805 www.drsalt.com.auNatures Happiness Mango Hill QLD 07 3886 3748 www.natureshappiness.com.auSinchies Reusable Food Pouches Currimundi QLD 0424 351 545 www.sinchies.com.au

SPORT AND RECREATION

Aquatic Management Services Tasmania Eden Street Riverside TAS 03 6327 3910 www.amstas.com.auBody Cycles PO Box 2082 Hackham SA 08 8377 0399 www.bodycyclesaustralia.com.au Coastrider 461 Clifton Beach Road Clifton Beach TAS 0419 324 921 www.coastrider.com.au

SUPPORT SERVICES

Angelman Syndrome Association PO Box 554 Sutherland NSW 02 8521 7463 www.angelmansyndrome.orgARC Disability Services Inc 92 Little Street Manunda QLD 07 4046 3600 www.arcinc.org.auAssociation of Genetic Support Australasia 66 Albion Street Surry Hills NSW 02 9211 1462 www.agsa-geneticsupport.org.auAustralian Kabuki Syndrome Association Inc 13 Lockwood Road Erindale SA www.kabukisyndromeassoc.com.auAustralian Leukodystrophy Support Group PO Box 2550 Mount Waverley VIC 1800 141 400 www.alds.org.auAustralian Mitochondrial Disease Foundation Suite 4, Level 69, 13 Young Street Sydney NSW 1300 977 180 www.amdf.org.auAutism Awareness Australia PO Box 288 Seaforth NSW 02 9904 8700 www.autismawareness.com.au Autism Spectrum Australia (ASPECT) 1800 277 328 www.autismspectrum.org.auAutism Tasmania PO Box 514 Moonah TAS 03 6278 9985 www.autismtas.org.auBeyond Blue PO Box 6100 Hawthorn West VIC 1300 224 636 www.beyondblue.org.auCARA 98 Woodville Road Woodville SA 08 8347 4588 www.cara.org.au Cerebral Palsy Australia Level 39, 259 George Street Sydney NSW 02 8259 7725 www.cpaustralia.com.au Cerebral Palsy League 55 Oxlade Drive New Farm QLD 1800 272 753 www.cpl.org.au CHARGE Syndrome PO Box 91 Glenfield NSW 02 9605 8475 www.chargesyndrome.org.au Cornelia De Lange Syndrome Association (Australasia) Inc PO Box 20 Putney NSW 02 9809 0287 www.cdlsaus.orgCri Du Chat Support Group of Australia 104 Yarralumla Drive Langwarrin 03 9775 9962 www.criduchat.asn.auDeaf Australia PO Box 1083 Stafford QLD 07 3357 8277 www.deafau.org.au Deaf Children Australia PO Box 6466 St Kilda Road Central VIC 1800 645 916 www.deafchildrenaustralia.org.au Down Syndrome Australia 219 Napier Street Fitzroy VIC 1300 658 873 www.downsyndrome.org.au Epilepsy Australia 20 Charrington Court Baulkham Hills NSW 1300 852 853 www.epilepsyaustralia.net Foundation for Angelman Syndrome Therapeutics Australia PO Box 248 Salisbury QLD 1300 078 108 www.cureangelman.org.au Hummingbirds 179 Dart Street Redland Bay QLD 0412 363 856 www.hummingbirdseies.com Langford Support Services PO Box 717 Moonah TAS 03 6228 9099 www.langford.org.auLearning Difficulties Coalition PO Box 140 Westmead NSW 02 9806 9960 www.ldc.org.au Lifeline PO Box 173 Deakin ACT 13 11 14 www.lifeline.org.auLions Club Australia 31–33 Denison Street Newcastle West NSW 02 4940 8033 www.lionsclub.com.au Mamre Association Inc 40 Finsbury Street Newmarket QLD 07 3622 1222 www.mamre.org.au Prader-Willi Syndrome Association VIC 0451 797 284 www.pws.asn.au

DIRECTORY

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Rare Voices Australia Ltd Suite 2, 3 The Postern Castlecrag NSW 02 9967 5884 www.rarevoices.org.au Rett Syndrome PO Box 855 West Perth WA 08 9489 7790 Royal Far West 19-21 South Steyne Manly NSW 02 8966 8500 www.royalfarwest.org.auSAKKS – Supporting Aussie Kids with Kabuki Syndrome PO Box 318 Rundle Mall SA 0422 608 858 www.sakks.org Spina Bifida Foundation Victoria Level 4, Ross House, 247 Flinders Lane

Melbourne VIC 03 9663 0075 www.sbfv.org.au

Steve Waugh Foundation Level 11, 17 York Street Sydney NSW 1300 669 935 www.stevewaughfoundation.com.auSyndromes Without A Name (SWAN) Australia PO Box 390 Fairfield 0404 280 441 www.swanaus.com.auThe Fragile X Association of Australia Suite 6, Level 3, 39 East Esplanade Manly NSW 1300 394 636 www.fragilex.org.auThe Shepherd Centre 146 Burren Street Newtown NSW 02 9370 4400 www.sherherdcentre.org.au Vision Australia 1300 847 466 www.visionaustralia.org Williams Syndrome Association of SA 83A Ridgway Drive Flagstaff Hill SA 08 7329 5409 www.wsasa.org.au Xavier Children’s Support Network 284 Pine Mountain Road MtGravatt East QLD www.xcsn.orgYoung People in Nursing Homes National Alliance 207 City Road Southbank VIC 0437 178 078 www.ypinh.org.au

THERAPY PROVIDERS

Ability First Australia Level 39, 259 George Street Sydney NSW 1800 771 663 www.abilityfirstaustralia.org.au

AEIOU Recreation Road Nathan QLD 07 3320 7500 www.aeiou.org.auAll About Kids Counselling and Psychology Shop 2, 33 Lisson Grove Wooloowin QLD 07 3262 6009 www.allaboutkids.com.auClifton Hill Physiotherapy 111 Queens Parade Clifton Hill VIC 03 9486 1918 www.cliftonhillphysiotherapy.com.auColour Kids PO Box 611 Riverstone NSW 0403 822 255 www.colourkids.com.auCootharinga North Queensland 20 Keane Street Currajong QLD 07 4759 2000 www.cootharinga.org.auCosmos Child 7/98 Barkly Street St Kilds VIC 0406 602 449 www.cosmoschild.comEveryday Independence PO Box 274 Carlton South VIC 1300 179 131 www.everydayind.com.auHappy Dots 5/58 Victory Parade Toronto NSW 02 4959 8920 www.happydots.com.auIn Sync Kids Occupational Therapy Body Organics 6 Ambleside Street West End QLD 0481 121 844 www.insynckidsot.com Kids Matters OT 2/747 Fairfield Road Yeerongpilly QLD 1300 136 596 www.kidsmatters.com.auKids OT Suite 13, Level 1, Forestway Shopping Centre

Frenchs Forest NSW 02 9451 5735 www.kidsot.com.au

KidsRISE Level 1/490 High Street Northcote VIC 0419 133 895 www.kidsrise.com.auMontrose Access Inc 54 Consort Street Corinda QLD 07 3379 9200 www.montroseaccess.org.auM.O.T.A. Melbourne Occupational Therapy Associates 603-605 Nicholson Street Carlton North VIC 03 9387 1734 www.melbourneot.com Movement Solutions Shop 1/26 Eva Street Coorparoo QLD 07 3324 2490 www.movementsolutions.com.auNacre Consulting 8 Steele Street South Caulfield VIC 0448 316 319 www.nacre.com.auNorthcott Disability Services 1 Fennell Street North Parramatta NSW 02 9890 0100 www.northcott.com.auNovita Children’s Services Days Road Regency Park SA 08 8243 8243 www.novita.org.auOCC Therapy PO Box 118 Kenmore QLD 07 3378 9543 www.occtherapy.com.auOccupational Therapy Helping Children 22 Marinna Road Elanora Heights NSW 02 9913 3823 www.occupationaltherapy.com.auOptimum Movement 11/116 Wellington Street Ormiston QLD 07 3821 3399Paediatric Physiotherapy Centre Kells House, 87 Buckley Street Moonee Ponds VIC 03 9917 2884 www.paediatricphysiotherapycentre.comPaediatric Therapy and Workshops PO Box 1478 Geelong VIC 0412 751 741 www.paediatricworkshops.com.auRocky Bay Inc 60 McCabe Street Mossman Park WA 08 9383 5111 www.rockybay.org.au Scope Victoria 830 Whitehorse Road Box Hill VIC 03 9843 3000 www.scopevic.org.au Sense Ability Unit 1/14 Clare Mace Crescent Berkeley Vale 02 4389 1812 www.senseability.com.au Small Talk Speech Therapy 22 Brunker Rd Broadmeadow NSW 1300 651 704 www.smalltalkspeechtherapy.com.auSpeech Pathology Tasmania 110 Elizabeth Street Hobart TAS 03 6234 5717 www.spt.com.au Speech Teach 07 3324 1114 www.speechteach.com.au Splash Occupational Therapy Wyndham Private Medical Centre, Level 1, Allied

Health Wing, 242 Hoppers Lane Werribee VIC03 8731 6555 www.splashtherapy.com.au

Sprout Paediatric Therapy Services 352 Main Street Mornington VIC 03 5975 9197 www.sprouttherapyservices.com.au St Giles 65 Amy Road Launceston TAS 03 6345 7333 www.stgiles.org.au The Therapy Place 508 Canterbury Road Vermont VIC 0421 127 628 www.thetherapyplace.com.auTherapies for Kids 37 Nelson Street Annandale NSW 02 9519 0966 www.therapiesforkids.com.auTLC Psychology P/L Australia wide 0410 788 844 www.tlcpsychology.com.auWattletree Centre 99 Wattletree Road Armadale VIC 03 9500 2844 www.wattletreecentre.com.au

TOYS AND RESOURCES

ARC Toy and Library Resource Centre 92 Little Street Manunda QLD 07 4046 3600 www.arcinc.org.auCleverstuff 1300 552 500 www.cleverstuff.com.auLife Skills 4 Kids PO Box 210 Forster NSW 02 6555 9877 www.abilitations.com.au Modern Teaching Aids 1800 251 497 www.teaching.com.auMy Diffability PO Box 3121 Caroline Springs VIC 03 8456 6613 www.mydiffability.com.auSenseAbilities PO Box 445 Montrose VIC 03 9726 8047 www.senseabilities.com.au Skill Builders Unit 1/24 Hammond Road Cockburn Central WA 1300 132 785 www.skillbuilders.com.auSpecial Needs 4 Special Needs 12 Stockridge Place Morayfield QLD 07 5428 7126 www.specialneeds4specialneeds.com.auThe Toy Bug 0400 375 351 ww.thetoybug.com.auWindmill Educational Toys and Equipment 265 Charles Street Launceston TAS 1800 333 634 www.windmill.net.au Zooba 34 Twin Peaks Road Bli Bli QLD 0410 620 240 www.zooba.net.au

Page 50: Source Kids Autumn Issue May 2015

50 AUTUMN 2015

all-in.com.au

All In! is an initiative developed by Northcott in collaboration with NSW Government Ageing, Disability and Home Care (ADHC) to help create a more inclusive community for children with disabilities.

All In! has been created as a guide to help people in the general community include children with disabilities in everyday events and activities occurring in their local community, at public facilities or in private homes.

All In! is really simple. The step-by-step process guides you through three simple questions. Pick the situation where you’ll be interacting with a child with a disability, choose what the child’s disability is (referred to as the ‘challenge’) and identify the child’s age. All In! gives you basic advice and tips on how you can include the child in your activity or setting. The advice is presented in a concise report that you can print and share with others in a similar situation.

fedup.com.au

Even if you are convinced there is absolutely nothing anyone in your family has an intolerance towards, this is fascinating reading. Success stories, factsheets, recipes and support are all provided in a balanced and informative way.

love We

Websites, blogs

& social media

Page 51: Source Kids Autumn Issue May 2015

AUTUMN 2015 51

Write My NameApple iOS app $4.99

itunes.apple.com/au/app/write-my-name/id500623496?mt=8

Our Occupational Therapist just introduced this app to me a few weeks ago. I’ve had a number of apps on our iPads for writing but this one excels at being easy to use. My son is kept highly engaged and the app even offers customised instant rewards for good work. The app has three different sections to practise writing skills.

• AlphabetABCconcentratessolelyonletterswithuppercaseand lowercase selections.

• MyNameTags,whereyoucancustomisethetagwithanimage, name, and recorded reward message. Parents/carers can choose letters, words or phrases.

• WordCards,whichasthenamesuggestshasjustasingleword, with a picture and audio reward when complete. It can be sorted by basic or ABC and has lower case and upper case selections.

This app doesn’t have that many settings, but finger print mode is a great addition. When you turn this on and trace the words, your tracing is shown on the reward pop up.

The app is very easy for a child to use, and it’s not frustrating like other writing apps I’ve purchased. It’s easy to drag the icon down to form the letter and if the user deviates in the middle, it doesn’t reset. Instead, it allows the child to just continue where they left off. You can also easily use one of the many iPad pens that are available for that ‘real writing’ feel.

The app is well worth the $4.99 price tag, and has no advertising or in app purchases to worry about. The only thing I would love to see is the ability to add a photo directly from the camera. Hopefully the developer will add this soon.

Mr Potato Head – Create & Playitunes.apple.com/us/app/mr.-potato-head-create-play/id934521471?mt=8&ign-mpt=uo%3D4

Mr & Mrs Potato head have shot to fame again thanks to the Toy Story movies. In both iPad apps, you can play as a Mr or a Mrs Potato head, by dressing them in a number of crazy outfits, and then transporting them to a world to play in. You can even take photos of your creations!

This is a fun app and you never lose any bits or step on them later! The free version has six cool outfits and two worlds to visit and play in. This was more than enough to keep my little one entertained for quite a while.

The app is free to download, but if you enjoy the app enough, you can purchase an in-app purchase for $6.49 which expands the game with 26 more outfits, and 13 cool new worlds to visit. There is also a paid version which is the same game fully unlocked for $6.49. As a free game it ticks all the boxes for some simple, fun play.

Tech-ManMichael Young

Page 52: Source Kids Autumn Issue May 2015

who have a child in the early years before school.

These workshops will help you to:

• learnmoreabouttheservicesandsupportsavailable

to you and your child

• understandhowCommonwealthfundingsuchasBetter

Start or NDIS works

• meetotherparentswhohavesimilarexperiencestoyou

• buildconfidenceanddeveloppositivestrategies

TheworkshopsarebeingrunacrossAustralia,incapitalcities

andregionalcentres.Parentscanfindoutmoreandregisterfor

workshopsbyvisitingthewebsitebetterstartearlydays.net.au

FREE workshops for parents

Areyouintheearlydaysofthejourneywithyourchildwitha

disability?Areyoustillfindingyourwayinthedisabilitysystem?

Doesyourchildhave:•Cerebralpalsy?•Downsyndrome?

•FragileXsyndrome?•Amoderateorgreatervisionor

hearingimpairment(includingdeafblindness)?•Oroneof

theseconditions:PraderWillisyndrome,Williamssyndrome,

Angelmansyndrome,Kabukisyndrome,Smith-Magenis

syndrome,CHARGEsyndrome,CorneliadeLangesyndrome,

CriduChatsyndrome,MicrocephalyandRett’sDisorder.

YoucanattendFREEone-dayworkshopsespeciallydesigned

foryou.TheBetterStartEarlyDaysworkshopsareforparents

ThisprogramisfundedbytheAustralianGovernmentDepartmentofSocialServices.ItisrunbytheFirstStepAlliance:CerebralPalsyAustralia,

DeafChildrenAustralia,DownSyndromeAustralia,FragileXAssociationofAustraliaandVisionAustralia.