Source Kids Autumn Issue May 2015

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Issue 1 April 2014 AUTUMN 2015

TUBEROUS SCLEROSIS

Sophie’s Story Your guide to

RESPITE

NDIS update Deon Kenzie breaking records

TWICE

exceptional

2

AUTUMN 2015

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AUTUMN 2015

CONTENTS 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

Allergies and intolerances

30

International Angelman Syndrome Day

32

Deon Kenzie – running for records

34

Tuberous Sclerosis and Sophie’s story

38

Physically managing older children

40

46

Welcome

What’s on calendar

5

48

NDIS and the latest

Steve Waugh Foundation

20

26

Regulars 2

Twice exceptional

We love

Directory

14

50

Product review - paediatric wheelchairs

24

Product feature – gross motor skills

36

Family profile – the Woolsey family

45

Book review – Asperger Syndrome in the classroom

Websites, blogs and social pages we love

51

App review

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AUTUMN 2015

Welcome

to our Autumn edition of Source Kids 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

Source Kids Marketing Co PO Box 5279, Launceston TAS 7250 Phone: 03 6327 1995 ABN: 66 434 598 812 Web: www.sourcekids.com.au Send all letters and submissions to: Source Kids, PO Box 5279, Launceston TAS 7250 or email editor@sourcekids.com.au Editorial enquiries: 03 6327 1995

Editorial Editor Marie-Louise Willis Writers: Rachel Williams and Marie-Louise Willis Contributors: 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

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.

Distribution Source kids is distributed through therapy centres, hospitals, paediatricians, special needs schools and early intervention centres. For distribution enquires, contact info@sourcekids.com.au

AUTUMN 2015

s t c u d o Pr We

love

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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.

EMBRACE

A 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.

INDOOR SEATING 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 Supportive foam positioning system toit augment postural control time to recover.

You can customise to suit your needs and for a wide range of individuals. Gravity Chair follows the principle ‘Tension and behaviour.

This is what wearables were supposed to be: quiet Relaxation’ whereby it: small and useful.

GRAVITY CHAIR 1.

Provides alternative seating

But Embrace so therapeutical much more aim thanofthat.

2. Servesisthe stable positioning

More than just a comfortable seat…

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

GRAVITY CHAIR

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

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

Client group • 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 the user back into the original position.

• Patients with perception deficit or ADHD get close body contact in the Gravity Chair which raises selfhelps the user We road awareness. tested theThis Gravity Chair recently and felt the need to stay calm. Gravity Chair to recommend thisanproduct can create optimal to readers. solution for many The Gravity Chair is a supportive foam positioning system occupational and provides postural support and control, using gravity therapy to hold the individual. requirements.

GRAVITY CHAIR

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 Accessories: underneath the chair to tilt it forwards or back as needed.

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

Standard Configuration: • Removable and washable cover

Mobile Base Wipeable Covers to extra large).

The Gravity Chair comes in four sizes (small 1 #3780-8701-000

1 #3781-0100-000

3 #3780-8703-000 4 #3780-8704-000

3 #3783-0100-000 4 #3784-0100-000

2 #3780-8702-000 2 #3782-0100-000 To find out more or to purchase visit www.medifab.com.au

NEW

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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 To subscribe complete the following form and post it to Source Kids, your details below and post to PO Box 5279, Launceston TAS 7250, or jump PO Box 5279, Launceston 7250, email it to info@sourcekids.com.au online and fill out our form at TAS www.sourcekids.com.au.

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Safe Surround Beds Take the nightmare out of night time!

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

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.

SAFE SURROUND PLUS For Space and Safety

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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

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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.

Contact Medifab to discuss how we can solve your night time needs with Safe Surround Beds: Call: 1300 543 343 Email: solutions@medifab.com www.medifab.com.au/safenight

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

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AUTUMN 2015

Rare Disease Summit Rare 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.

NDIS ACT Conference In 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 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.

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.

So much fun!

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AUTUMN 2015

8 TOP

HOW TO NEGOTIATE YOUR CHILD’S IEP

2

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.

3

TIPS

1

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

I f 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.

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

4 5

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.

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

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

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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.

AUTUMN 2015

NEXT GENERATION GENETICS FOR THE NEXT GENERATION

...to infinity and beyond

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; • ‘Diagnostic gene panels’ i.e. known genes associated with a specific clinical phenotype, or • Genome Wide Exome Sequencing (GWES) i.e. the entire coding DNA is sequenced.

NGS in health care – Diagnostic Gene Panels Diagnostic 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

• Cardiac disease (e.g. Dilated and Hypertrophic Cardiomyopathy) • Inborn errors of metabolism (e.g.

Mitochondrial diseases, Lysosomal storages diseases) • Dysmoprhic syndromes with a known molecular/genetic basis

NGS in Health Care – GWES

Words by Dr David Coman 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).

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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: • To secure an accurate and confirmed clinical/molecular diagnosis to: – Institute early therapeutic intervention where possible – Provide the family/patient with an understanding of the disease’s natural history and prognosis.

• To offer a targeted examination of 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: • Hereditary Cancer Syndromes – Breast Cancer – Colon Cancer and Polyposis Syndromes (Lynch Syndrome) – Prostate Cancer – Endocrine tumours – Epilepsy syndromes and migraines • Sensorineural Hearing Loss (SNHL) – Nonsyndromic SNHL – Autosomal recessive SNHL – Autosomal dominant SNHL – X-linked SNHL • Congenital brain malformations • Neuromuscular diseases (e.g. Charcot-Marie-Tooth Disease) • Ion channel diseases (e.g. Cardiac Arrthymias, Myotonia Congenita) • Connective tissue diseases (e.g. Ehlers-Danlos Syndrome) • Genetic ocular diseases (e.g. Retinitis Pigmentosa)

Extending 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 Challenges The 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

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AUTUMN 2015

THE INS AND OUTS OF

respite 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.

T

aking 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:

What kind of respite do you need?

•

Do you need to take a few hours to get your housework done and paperwork completed?

•

Do you need to get a haircut?

•

Does your child wake during the night and you’re desperate for a full night’s sleep?

•

Would you like to spend some time with your other children – allowing their needs to come first for a change?

•

I s there a holiday you’d like to take that isn’t suitable for your special needs child?

•

Do you just need a break from being a carer to be ‘you’ again for a bit?

AUTUMN 2015

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Family Pros: 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.

Friends Pros: 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.

What kind of respite is there?

Option 2 – you can leave the home:

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.

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

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:

Pros: Shopping! Haircut! Manicure! Wishful thinking …

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 centres Respite 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

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AUTUMN 2015

Employing a nanny You 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 pair

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.

Typically 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.

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

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 camps

Most 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.

Especially 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:

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 care

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.

AUTUMN 2015

13

WHY RESPITE IS

IMPORTANT

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.

Zalia Powell Social Worker (BSW Hons)

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AUTUMN 2015

ct Prodiuew rev

Wheelchairs

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!

The true-blue custom-made

For the beach and the slopes!

Std Cambar Joey

Hippocampe

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

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

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.

Practical and lightweight, the compact Hippocampe, with folddown 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.

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.

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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AUTUMN 2015

The all-rounder

Kudu Brace 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-inspace 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.

Specialising in fun, funky and functional equipment, with a range of: ⃝ seating systems ⃝ standing frames ⃝ sleep systems ⃝ walking aids ⃝ bathing/toileting aids ⃝ strollers and buggies ⃝ tricycles and much more

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

Follow us

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AUTUMN 2015

NOW SERVICING THE PUBLIC DIRECT IN NSW AND ACT

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

SEATING

STANDING

WALKING

BATHROOM

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

Kudu Wheelchair NFROEMW R82 5 1 IN 20

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 R82au@R82.com or call (02) 8213 6666 SPECIALISTS IN TECHNIC AL AIDS FOR CHILDR EN

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AUTUMN 2015

For the laidback

For the teeny tot

Rifton CGX

Zippie Kidz

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

Explore with the smallest Zippie perfect for independent toddlers! www.sunrisemedical.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.

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.

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

37–63cm

From 53–69cm

25–36cm

40–60kg

From 90.6–135.9kg

68kg

From 20kg

19–25kg

From 17.2kg

6.5kg

From 67cm

46–56cm

37–47cm

Max User Weight Weight of Chair Width

Custom

67cm

59–71cm

Length

Custom

From 167–202cm

69–74cm

Height

Custom

1m

94cm

No

-5 to 30 degrees in all models

No

-3 to 45 degrees in all models

Tilt Recline

Yes

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AUTUMN 2015

A DVE RTOR I A L

PME Group

IMAGE ©SUNRISE MEDICAL

Formerly 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

Zippie X’CAPE Wheelchair available from PME Group

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…

1300 131 884

www.pmegroup.com.au Mobility • Seating • Standing • Positioning • Hygiene • Manual Handling

AUTUMN 2015

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STEVE WAUGH FOUNDATION 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.

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

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)

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AUTUMN 2015

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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Our cover story

P

arents 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.’’

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

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

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.

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

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

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

Q A

hat are the latest treatment options for W people with TSC? 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.

With Clare Stuart GENERAL MANAGER Tuberous Sclerosis Australia

Q A

What research is underway to find a cure?

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.

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 A

Which support groups/assistance would you suggest for families? ontacting Tuberous Sclerosis Australia (TSA) is a good C 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.

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

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Creating engaging learning environments for over 50 years

Tactile and sensory resources for kids of all ages and learning styles P 1800 251 497

F 1800 151 492

W teaching.com.au

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

The Jennswing速 and JennSwing Cubby II速 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速 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.

www.jennswing.com.au

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

Customer Care 02 9833 4599

Salesaus@jennswing.com.au

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AUTUMN 2015

Nest Swing (Oval) – $165 Available from Awesome Playgrounds www.awesomeplaygrounds.com.au

Disc ‘O’ Sit – from $56.95

C Available from Windmill Educational www.windmill.net.au

Special Needs Adaptive Swing – $995 Available from Awesome Playgrounds www.awesomeplaygrounds.com.au

GROSS MOTOR SKILLS Products

Step-A-Stones – $85 Available from Windmill Educational www.windmill.net.au

Teeter Popper – $62.95 Available from Windmill Educational www.windmill.net.au

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

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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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AUTUMN 2015

ALLERGIES &

INTOLERANCE’S

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.

CONSULTING ESTABLISHED FOR OVER 30 YEARS 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.

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

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

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

Ph 0448 316 319 www.nacre.com.au

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ALLERGY vs INTOLERANCE: which one is it?

Asthma

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).

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.

www.asthmaaustralia.org.au

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

ALLERGY explanation An 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, burning and swelling around the mouth • runny nose • skin rash (eczema) • hives (urticaria – skin becomes red and raised) • diarrhoea, abdominal cramps • breathing difficulties, including wheezing and asthma • vomiting, nausea.

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!

NORMAL

INTOLERANCE explanation An 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 • rapid breathing • headache, migraine • diarrhoea • burning sensations on the skin • tightness across the face and chest • breathing problems – asthma-like symptoms • allergy-like reactions.

COELIAC DISEASE

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

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Eczema

Irritable Bowel Syndrome

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

www.ibsdiets.org

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.

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.

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: • Dry skin • S cratching (night gloves and clipped fingernails may be needed in young children) • Viral or bacterial infections • Swimming in chlorinated swimming pools • Playing in sand and particularly sandpits • Sitting directly on carpets or grass • I nhalant allergens – worsening of eczema in spring and summer may also be due to pollen sensitivity • F ood intolerances to artificial colour and preservative in some people • I rritants such as perfumes, soap, chemicals, woollen or synthetic fabrics • Temperature changes (such as heat) or overly heated rooms • S tress (this can make it worse but eczema is not a psychological condition).

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 Intolerance Lactose 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 Sensitivity www.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 Diseases Usually 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.

AUTUMN 2015

Allergies, Intolerances, Diseases, Disorders and Diet This 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.

29

Resources www.fedup.com.au Sue 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.au Dr 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 Davis The 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 Gedgaudas Nora 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.

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INTERNATIONAL

Angelman Syndrome Day 15 February 2015 Finding a cure for Angelman Syndrome in the next decade is a very real prospect.

Meagan Cross and daughter Molly

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

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.’’

A

ngelman 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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Case study

JAKE TOWNSEND 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.’’

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

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RUNNING FOR RECORDS

Deon Kenzie 1500m World Record Holder – T38

D

eon 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.

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

“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.’’

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AUTUMN 2015

THE NATIONAL DISABILITY INSURANCE SCHEME

THE LATEST

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

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.

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

“This was acknowledged right from the start. The Productivity

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

Commission prepared the blueprint for this scheme and

Mr Bowen told a meeting of NDIS participants during a

acknowledged that there was no assessment tool that would

roadshow meeting in January that the scheme is on budget and

work for everybody in all circumstances, and that the agency

within the funding envelope. However, he admitted there had

would have to build one.

been concerns about the process.

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

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

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

changes that are necessary,’’ Mr Bowen said.

funding.

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

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

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

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

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35

that the Productivity Commission built around 24 different

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

disability types using international classifications of function and

that is an important piece of work.”

disability to identify seven domains of movement and reference

He noted one positive accommodation example in the ACT.

supporting those domains.

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

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

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

to make use of more information that might be available about

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

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

The tenants had to sign a good neighbour agreement and help

necessary package.

with things like shopping and cleaning for the people with a

“This is not moving towards impairment tables where you get

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

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

Mr Bowen also shared details of a number of positive programs

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

underway as part of the NDIS.

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

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

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AUTUMN 2015

Profile

THE

Woolsey Family

Our family consists of: Joe and Jenny Woolsey (parents) and Melissa (13), Nick (10) and Jessica (7).

We live: North of Brisbane in Queensland.

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

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.

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

Our favourite places to go as a family are: •

The zoo (we all love animals)

•

The local swimming pool for swimming lessons.

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

•

Going to the library

All three children see a team of specialists.

•

Cuddling and playing with our cats and dog.

Our favourite activities are:

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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.

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

Where to find out more

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

Jenny manages three Facebook support groups, including:

And the most annoying/unhelpful advice:

Crouzon Syndrome Specific: • International Crouzon Syndrome Support Group • Australian Crouzon and Pfeiffer Syndromes Support Group

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:

Any Facial Difference:

•

Who our true friends are

• Our Faces Support Group (www.ourfacessupport. org.au)

•

Patience

•

To trust in medical specialists expertise and knowledge

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

•

To trust in God that everything will be alright in the end

•

To be advocates for our children

•

To be advocates for people with facial differences and Down Syndrome

•

That children develop at their own pace and it is best not to compare your child to others.

We would never manage without: • •

Our faith in God Each other (Joe and Jenny).

Products we love:

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’t sweat the small stuff

•

Don’t hide your children with special needs away – take them out in the world and help them to live their life to their full potential

•

Seek out help if you are not coping – it is okay to admit you need it.

•

Books: How to Train Your Dragon series, Goosebumps, Dork Diaries, Diary of a Wimpy Kid, Christy Miller Series

•

DVDs: most children’s animated films, How To Train Your Dragon series and animal documentaries

• • • • • •

Favourite cartoon: Adventure Time Art: drawing equipment and paper iPad Toys: stuffed zoo animals, bead mazes, abacus and dolls Sports: trampoline, scooters and skateboards Music: iTunes, microphones, YouTube videos etc.

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

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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 3

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

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

Physically

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!

MANAGING 6 OLDER CHILDREN

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.

I

t 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.

7

When 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?

Maximise your child’s ability to

Maximise your child’s physical potential Experienced managers of children with mobility issues, developmental delay or musculoskeletal and orthopaedic conditions. We focus on family centred practice and use commonsense and empathy when caring for our clients. Collaborative goal setting is an integral part of our service.

•Equipment & orthotic prescription •Fully-equipped rooms •Gym •Exercise and circuit classes •Hydrotherapy •Home & school visits

(07) 3324 2490 movementsolutions.com.au

live, lea n and play r We can help with:  Eating and dressing  Toilet training  Fine motor skills  Learning, attention and behaviour and handwriting

We support children with mild and complex needs. We can travel to you, and offer rebates through Medicare, private health and FahCSIA.

PH: 07 3378 9543  www.occtherapy.com.au

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AUTUMN 2015

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.

What you need

11

• A bdominal muscle, bottom and leg strength

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 15

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

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.

17 18 19 20

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

Avoid bending and twisting also.

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

Try 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.

• General fitness

• Time to complete a safe transfer

TOP TI PS

• A ssistance: from your child, from another carer or from transfer aids

Your team • C onsult with your physio and OT to ensure that appropriate techniques and equipment are used in a timely manner to prevent injury • Your therapist can organise equipment trials • E quipment can be prescribed by your therapists under various funding options • An additional carer if required

Be ready • • • • •

Check your posture Bend your needs and brace your abdominals Have your transfer equipment ready if necessary Keep your child close during assisted transfers Avoid twisting

The space • Remove obstacles – keep uncluttered • Use clear instructions to your child and/or another carer • A ngle mobility aids and equipment to reduce the distance between them. Always step or turn to your child’s good side

Transfer aids/equipment to consider • • • • • • • • • •

Transfer belt Slide sheets Adjustable height bed Slide board Hoist and sling Properly installed hand rails Shower chairs, wheeled toilet/shower commodes Swivel seat for cars Modified vehicle for wheelchair access.

Hobless shower

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

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

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.

Therapies for Kids PAEDIATRIC PHYSIOTHERAPY, OCCUPATIONAL THERAPY, SPEECH PATHOLOGY & PODIATRY

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

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AUTUMN 2015

Gifted, misdiagnosed, or TWICE

EXCEPTIONAL Its not as easy as 1,2,3 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.

There are three areas of concern: • Children who are not being recognised as gifted; • C hildren who are misdiagnosed as having a disability where in fact they are gifted; and • C hildren who are gifted, who also have a disability. These children are known as ‘Twice Exceptional’.

The gifted and overexcitabilities The 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.

Psychomotor The 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.

• Rapid speech • Impulsive behaviour • Competitiveness • Compulsive talking • Compulsive organising • Nervous habits and tics • Preference for fast action • Sleeplessness and sports • Physical expression of emotions

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Sensual

Emotional

The 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.

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.”

• Extremes of emotion • Anxiety • Feelings of guilt and sense of responsibility • Feelings of inadequacy and inferiority • Timidity and shyness • Loneliness • Concern for others • Heightened sense of right and wrong, of injustice and hypocrisy • Strong memory for feelings • Problems adjusting to change • Depression • Need for security • Physical response to emotions (stomach aches caused by anxiety, for example)

• A ppreciation of beauty, whether in writing, music, art or nature – includes love of objects like jewellery • Sensitive to smells, tastes, or textures of foods • Sensitivity to pollution • Tactile sensitivity (Bothered by feel of some materials on the skin, clothing tags) • Craving for pleasure • Need or desire for comfort

Intellectual This 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.

• Love of knowledge and learning • Deep curiosity • Love of problem solving

• Avid reading

• Asking of probing questions

• Theoretical thinking

• Analytical thinking

• Independent thinking

• C oncentration, ability to maintain 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.

• • • • •

Vivid dreams Good sense of humour Love of poetry, music and drama Daydreaming Detailed visualisation

• • • •

Fear of the unknown Magical thinking Love of fantasy Imaginary friends

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* 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.

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Characteristics of students with ADHD

Characteristics of gifted students who are bored

Poorly 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

I mpaired 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)

Gifted and ADHD If 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 • C ould the behaviours be responses to inappropriate placement, insufficient challenge, or lack of intellectual peers?

• Is the child able to concentrate when interested in the activity?

• H ave any curricular modifications been made in an attempt to change inappropriate behaviours?

• H as the child been interviewed? What are his/her feelings about the behaviours?

• D oes the child feel out of control? Do the parents perceive the child as being out of control?

• D o the behaviours occur at certain times of the day, 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 Syndrome While 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.

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 Exceptional These 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 • High abstract reasoning ability • Good mathematical reasoning ability • Keen visual memory, spatial skills • Advanced vocabulary • Sophisticated sense of humour • Imaginative and creative • Insightful • Exceptional ability in geometry, science, arts, music • Good problem-finding and -solving skills • Difficulty with memorisation, computation, phonics, and/or spelling • Distractibility and/or disorganisation • Super sensitivity • Perfectionism • Grasp of metaphors, analogies, satire • Comprehension of complex systems • Unreasonable self expectations • Often, failure to complete assignments • Difficulties with sequential tasks • Wide variety of interests (Baum, Owen, & Dixon, 1991; Silverman, 1989)

AUTUMN 2015

TWICE EXCEPTIONAL The Smith family 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

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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

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THE ESSENTIAL MANUAL FOR ASPERGER SYNDROME (ASD) IN THE CLASSROOM

Why every teacher should own this book WORDS | Kathy Hoopmann 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: 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.

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AUTUMN 2015

Here are just a few tips:

1 2

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

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 5 6

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

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

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 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.

WANT THE BEST FOR YOUR SUPERHERO? Sign up at footprint.com.au for the latest books and CDs

footprint books

parents carers families teachers professionals info@footprint.com.au

1300 260 090

www.footprint.com.au

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May Miracle Month of May

What’s on

Held 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 May

Take part in the 5k a day in May to raise awareness and muchneeded 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

3

Port Pirie Fun Run/Walk

Support 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 Week

This 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

6

World Asthma Day www.nationalasthma.org.au

10

Mother’s Day

A celebration of all mothers out there!

Royal Queensbury Championship

Each 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

1

Starlight Day Race to Shine

This 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

1-7

Bike 4 Burns

This 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

3

Two Feet and a Heartbeat

Step 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

11-17

National Volunteer Week

The 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

15-21

National Families Week

Celebrate the meaning of family and make the most of family time.

www.familiesaustralia.org.au/familiesweek

17

Sydney Morning Herald Half Marathon

Take 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

17-23

Variety NSW AHA Bash

The 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

17-23

Food Allergy Awareness Week www.allergyfacts.org.au

AUTUMN 2015

Calendar 22-23

24 hr Treadmill Challenge

Over 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

25-31

Spinal Health Week www.chiropractors.asn.au

31

Balmoral Burn

This 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.

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28

Stay in Bed Day

Sleep 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 July Bravehearts 777 Marathon

The 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

www.humpty.com.au

June Congenital CMV Awareness Month www.cmv.org.au

4-5

Gold Coast Airport Marathon

Challenge 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

6-12

Sleep Awareness Week www.sleephealthfoundation.org.au

Starlight Smile Project

Help 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

9

Gold Telethon

The major fundraiser for the Sydney Children’s Hospital Foundation.

www.goldtelethon.org.au

14

Brisbane Times City2South

Take 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

26

The Age Run Melbourne

Run 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

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DIRECTORY AIDS AND EQUIPMENT Abilitations Achievable Concepts Calming Kids DoAbility Kids JennSwing Australia Korthotics Medifab Milestones Therapy PME Group ProOptics Special Needs Solutions Springfree Trampoline R82

PO Box 210 Forster NSW 5 Collins Close Caves Beach NSW 4 Burgess Street Hamersley WA 53 Stubbs Street Kensington VIC 77 Glossop Street St Marys Sydney NSW 5/10 George Street Leichhardt NSW 26 Pardoe Street East Devonport TAS PO Box 1387 Macquarie Centre PO NSW 7 George Street Sydenham NSW 12 Everest Drive Southport QLD PO Box 819 Buderim QLD PO Box 284 Botany NSW

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52-54 Tamar Street Launceston TAS 18/427 Hampton Street Hampton VIC Mango Hill QLD Currimundi QLD

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Eden Street Riverside TAS PO Box 2082 Hackham SA 461 Clifton Beach Road Clifton Beach TAS

03 6327 3910 08 8377 0399 0419 324 921

www.amstas.com.au www.bodycyclesaustralia.com.au www.coastrider.com.au

PO Box 554 Sutherland NSW 92 Little Street Manunda QLD 66 Albion Street Surry Hills NSW 13 Lockwood Road Erindale SA PO Box 2550 Mount Waverley VIC Suite 4, Level 69, 13 Young Street Sydney NSW PO Box 288 Seaforth NSW

02 8521 7463 07 4046 3600 02 9211 1462

www.angelmansyndrome.org www.arcinc.org.au www.agsa-geneticsupport.org.au www.kabukisyndromeassoc.com.au www.alds.org.au www.amdf.org.au www.autismawareness.com.au www.autismspectrum.org.au www.autismtas.org.au www.beyondblue.org.au www.cara.org.au www.cpaustralia.com.au www.cpl.org.au www.chargesyndrome.org.au www.cdlsaus.org www.criduchat.asn.au www.deafau.org.au www.deafchildrenaustralia.org.au www.downsyndrome.org.au www.epilepsyaustralia.net www.cureangelman.org.au www.hummingbirdseies.com www.langford.org.au www.ldc.org.au www.lifeline.org.au www.lionsclub.com.au www.mamre.org.au

CLOTHING AND ACCESSORIES Little Big Feet Little Toggs Wonsie Bodysuits

HEALTH AND NUTRITION Bellamy’s Organic Dr Salt Natures Happiness Sinchies Reusable Food Pouches

SPORT AND RECREATION Aquatic Management Services Tasmania Body Cycles Coastrider

SUPPORT SERVICES Angelman Syndrome Association ARC Disability Services Inc Association of Genetic Support Australasia Australian Kabuki Syndrome Association Inc Australian Leukodystrophy Support Group Australian Mitochondrial Disease Foundation Autism Awareness Australia Autism Spectrum Australia (ASPECT) Autism Tasmania Beyond Blue CARA Cerebral Palsy Australia Cerebral Palsy League CHARGE Syndrome Cornelia De Lange Syndrome Association (Australasia) Inc Cri Du Chat Support Group of Australia Deaf Australia Deaf Children Australia Down Syndrome Australia Epilepsy Australia Foundation for Angelman Syndrome Therapeutics Australia Hummingbirds Langford Support Services Learning Difficulties Coalition Lifeline Lions Club Australia Mamre Association Inc Prader-Willi Syndrome Association

PO Box 514 Moonah TAS PO Box 6100 Hawthorn West VIC 98 Woodville Road Woodville SA Level 39, 259 George Street Sydney NSW 55 Oxlade Drive New Farm QLD PO Box 91 Glenfield NSW PO Box 20 Putney NSW 104 Yarralumla Drive Langwarrin PO Box 1083 Stafford QLD PO Box 6466 St Kilda Road Central VIC 219 Napier Street Fitzroy VIC 20 Charrington Court Baulkham Hills NSW PO Box 248 Salisbury QLD 179 Dart Street Redland Bay QLD PO Box 717 Moonah TAS PO Box 140 Westmead NSW PO Box 173 Deakin ACT 31–33 Denison Street Newcastle West NSW 40 Finsbury Street Newmarket QLD VIC 0451 797 284 www.pws.asn.au

1800 141 400 1300 977 180 02 9904 8700 1800 277 328 03 6278 9985 1300 224 636 08 8347 4588 02 8259 7725 1800 272 753 02 9605 8475 02 9809 0287 03 9775 9962 07 3357 8277 1800 645 916 1300 658 873 1300 852 853 1300 078 108 0412 363 856 03 6228 9099 02 9806 9960 13 11 14 02 4940 8033 07 3622 1222

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Rare Voices Australia Ltd Rett Syndrome Royal Far West SAKKS – Supporting Aussie Kids with Kabuki Syndrome Spina Bifida Foundation Steve Waugh Foundation Syndromes Without A Name (SWAN) The Fragile X Association of Australia The Shepherd Centre Vision Australia Williams Syndrome Association of SA Xavier Children’s Support Network Young People in Nursing Homes National Alliance

Suite 2, 3 The Postern Castlecrag NSW PO Box 855 West Perth WA 19-21 South Steyne Manly NSW PO Box 318 Rundle Mall SA Victoria Level 4, Ross House, 247 Flinders Lane Melbourne VIC Level 11, 17 York Street Sydney NSW Australia PO Box 390 Fairfield Suite 6, Level 3, 39 East Esplanade Manly NSW 146 Burren Street Newtown NSW

49

02 9967 5884 08 9489 7790 02 8966 8500 0422 608 858 03 9663 0075

www.rarevoices.org.au

1300 669 935 0404 280 441 1300 394 636 02 9370 4400 1300 847 466 08 7329 5409 0437 178 078

www.stevewaughfoundation.com.au www.swanaus.com.au www.fragilex.org.au www.sherherdcentre.org.au www.visionaustralia.org www.wsasa.org.au www.xcsn.org www.ypinh.org.au

Level 39, 259 George Street Sydney NSW

1800 771 663

www.abilityfirstaustralia.org.au

Recreation Road Nathan QLD Shop 2, 33 Lisson Grove Wooloowin QLD 111 Queens Parade Clifton Hill VIC PO Box 611 Riverstone NSW 20 Keane Street Currajong QLD 7/98 Barkly Street St Kilds VIC PO Box 274 Carlton South VIC 5/58 Victory Parade Toronto NSW 6 Ambleside Street West End QLD 2/747 Fairfield Road Yeerongpilly QLD Suite 13, Level 1, Forestway Shopping Centre Frenchs Forest NSW Level 1/490 High Street Northcote VIC 54 Consort Street Corinda QLD 603-605 Nicholson Street Carlton North VIC Shop 1/26 Eva Street Coorparoo QLD 8 Steele Street South Caulfield VIC Fennell Street North Parramatta NSW Days Road Regency Park SA PO Box 118 Kenmore QLD 22 Marinna Road Elanora Heights NSW 11/116 Wellington Street Ormiston QLD Kells House, 87 Buckley Street Moonee Ponds VIC PO Box 1478 Geelong VIC 60 McCabe Street Mossman Park WA 830 Whitehorse Road Box Hill VIC Unit 1/14 Clare Mace Crescent Berkeley Vale 22 Brunker Rd Broadmeadow NSW 110 Elizabeth Street Hobart TAS

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83A Ridgway Drive Flagstaff Hill SA 284 Pine Mountain Road MtGravatt East QLD 207 City Road Southbank VIC

www.royalfarwest.org.au www.sakks.org www.sbfv.org.au

THERAPY PROVIDERS Ability First Australia AEIOU All About Kids Counselling and Psychology Clifton Hill Physiotherapy Colour Kids Cootharinga North Queensland Cosmos Child Everyday Independence Happy Dots In Sync Kids Occupational Therapy Body Organics Kids Matters OT Kids OT KidsRISE Montrose Access Inc M.O.T.A. Melbourne Occupational Therapy Associates Movement Solutions Nacre Consulting Northcott Disability Services 1 Novita Children’s Services OCC Therapy Occupational Therapy Helping Children Optimum Movement Paediatric Physiotherapy Centre Paediatric Therapy and Workshops Rocky Bay Inc Scope Victoria Sense Ability Small Talk Speech Therapy Speech Pathology Tasmania Speech Teach Splash Occupational Therapy Sprout Paediatric Therapy Services St Giles The Therapy Place Therapies for Kids TLC Psychology P/L Australia wide Wattletree Centre

Wyndham Private Medical Centre, Level 1, Allied Health Wing, 242 Hoppers Lane Werribee VIC 352 Main Street Mornington VIC 65 Amy Road Launceston TAS 508 Canterbury Road Vermont VIC 37 Nelson Street Annandale NSW 99 Wattletree Road Armadale VIC

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TOYS AND RESOURCES ARC Toy and Library Resource Centre Cleverstuff Life Skills 4 Kids Modern Teaching Aids My Diffability SenseAbilities Skill Builders Special Needs 4 Special Needs The Toy Bug Windmill Educational Toys and Equipment Zooba

92 Little Street Manunda QLD 07 PO Box 210 Forster NSW PO Box 3121 Caroline Springs VIC PO Box 445 Montrose VIC Unit 1/24 Hammond Road Cockburn Central WA 12 Stockridge Place Morayfield QLD 265 Charles Street Launceston TAS 34 Twin Peaks Road Bli Bli QLD

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s g o l b , es t i s b e ia W d e m l & socia 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.

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AUTUMN 2015

Tech-Man Michael Young

Write My Name Apple 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.

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Alphabet ABC concentrates solely on letters with uppercase and lowercase selections.

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My Name Tags, where you can customise the tag with an image, name, and recorded reward message. Parents/carers can choose letters, words or phrases.

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Word Cards, which as the name suggests has just a single word, 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 & Play itunes.apple.com/us/app/mr.-potato-head-createplay/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.

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FREE workshops for parents

Are you in the early days of the journey with your child with a disability? Are you still finding your way in the disability system?

who have a child in the early years before school.

Does your child have: • Cerebral palsy? • Down syndrome?

• Fragile X syndrome? • A moderate or greater vision or hearing impairment (including deafblindness)? • Or one of these conditions: Prader Willi syndrome, Williams syndrome, Angelman syndrome, Kabuki syndrome, Smith-Magenis syndrome, CHARGE syndrome, Cornelia de Lange syndrome, Cri du Chat syndrome, Microcephaly and Rett’s Disorder.

• learn more about the services and supports available

You can attend FREE one-day workshops especially designed for you. The Better Start Early Days workshops are for parents

and regional centres. Parents can find out more and register for

These workshops will help you to: to you and your child • understand how Commonwealth funding such as Better Start or NDIS works • meet other parents who have similar experiences to you • build confidence and develop positive strategies The workshops are being run across Australia, in capital cities workshops by visiting the website betterstartearlydays.net.au

This program is funded by the Australian Government Department of Social Services. It is run by the First Step Alliance: Cerebral Palsy Australia, Deaf Children Australia, Down Syndrome Australia, Fragile X Association of Australia and Vision Australia.