Source Kids Issue 1 June 2014

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Issue 1 April 2014 Issue 1 – June 2014

FEELING THE PRESSURE? TIPS TO HELP YOU COPE

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THE SOS APPROACH TO FEEDING BETTER START?

NDIS MEDICAL MARIJUANA AND EPILEPSY illegal or useful?

PLUS

have a diagnosis | Y–ou now what? utism | Aexplained

y our questions answered

MAINSTREAM vs DEVELOPMENT SCHOOL

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JUNE 2014

CONTENTS Features

6 10 12 15 16 19 20 22 25 26 29 30 32 34

Your child has a diagnosis, now what?

38

Rare Diseases Day

Medical marijuana and epilepsy – illegal or useful?

Feeling the pressure? Six tips to help you cope Salt sensation Steep challenge – Balfour Burn Better Start?

Top 10 tips for a stress-free haircut The SOS approach to feeding Autism explained Therapy planning for your child Mainstream vs development schools Getting to the ‘root’ of development Getting stoked – surf’s up!

NDIS – your questions answered

Regulars

2 Welcome 3 Products we love 4 Product review – DMO from Korthotics 9 Competitions 14 Product review – Trampolines 36 Websites and blogs we love 37 Recipe corner – Cacao Bliss Balls 40 What’s on 42 Directory 44 Apps we love 45 Book reviews

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JUNE 2014

Welcome

THE TEAM

to Source Kids

I am incredibly excited and proud to welcome you to the first issue of Source Kids. After months of brainstorming, planning and hard work from the Source Kids team, our June 2014 launch issue is here!

Emma Price Publisher emma@sourcekids.com.au

Angie Hart Advertising and Sales advertising@sourcekids.com.au

Rachel Williams Editorial editor@sourcekids.com.au

Marie-Louise Willis Editorial editor@sourcekids.com.au

Now if you had told me 12 months ago that I would have created Source Kids, I would have said “No way!” I am what you would class as a typical Mum of a special needs child. I am constantly looking for ideas, opportunities and information that will help my 5-year-old daughter, who has Angelman Syndrome.

I’m sure this sounds familiar amongst our readers, we are always searching for our kids. But I was getting sick of searching, and spending hours trying to find information, products, services and resources. It was downright hard, trawling through the minefield of websites and social media sites and then still not finding what I was after.

Talking to other parents, I discovered we were all in the same boat. So I decided to solve the world’s problems – not really – but I did decide to do something about my own frustration and hopefully help others by creating Source Kids.

The goal of Source Kids is to deliver reliable, relevant and up-to-date information in a vibrant and positive way.

This issue is a true reflection of what we want to achieve and delivers some great articles about Medical Marijuana and Epilepsy, the SOS Approach to Feeding, Surf’s Up, Mainstream vs Development Schools and information about Better Start and NDIS plus loads more.

So to the team at Source Kids – I couldn’t have asked for a more talented or dedicated team to work with, thank you.

To my husband and family – thanks for your support and listening to me (constantly) talking about Source Kids. To our advertisers – thank you for supporting this great publication.

And of course to our readers – we hope you enjoy this issue and many more to come and thanks for reading!

Karen Anderson Graphic Design info@sourcekids.com.au

Published By Marketing Co 262 York Street, Launceston TAS 7250 Phone: 1300 882 370 ABN: 66 434 598 812 Web: www.sourcekids.com.au Editorial Contributions Rachel Williams, Marie-Louise Willis, Heidi Hoskings, Robyn Duregger, Fiona Jones and Zalia Powell Distribution

Emma Price Publisher

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

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JUNE 2014

PRODUCTS

Y Sinchies

We

love

www.sinchies.com.au You know those squeezy baby food and yoghurt pouches? The pouches that supermarkets sell; that are ridiculously expensive, full of sugar and who knows what else; and wastefully bad for the environment? The ones that my Miss 4½ year old (who could only tolerate purees until recently) has practically lived off since she learnt how to hold the pouch and feed herself? I don’t even want to think how many we’ve been through. And that has been purely because of the ease of delivery.

I like to cook. I have a Thermomix. I make my own yoghurt.

And I was not happy with the preservatives and sugar that my daughter was consuming on a daily basis BUT packing food, bowls and spoons plus then having to find a spot to actually

Y Wonsie

Initially targeted at children with Autism or older kids in general who are still in nappies, ‘Wonsies’ are great for children who no longer fit into standard sized onesies but still need the coverage they provide. Perfect for children with all different special needs, they help to keep wandering hands out of nappies, deter inappropriate undressing, keep curious fingers out of feeding buttons/PEG tubes, prevent kids with eczema from scratching their tummies and they maintain a warm layer under clothes.

Wonsie specialises in sizes starting where most brands finish and have recently expanded the size range to include sizes from two to 14 (which can fit many adults too).

The suits are designed for comfort, durability and everyday wear and there are a range of styles and colours available.

A new addition to the range, the Tummy Access Wonsie, is specially designed for children who are tube fed or have medications that are administered via the abdominal area.

The Wonsie has a discreet and soft opening at the front for tube access.

Wonsie offers free shipping to Australian addresses and also ship across the world. You can save 20% if you purchase three or more Wonsies in any one order, just use the discount code WONSIE at checkout.

See www.wonsie.com.au for more information or to purchase a Wonsie or pop on over to www.sourcekids. com.au/competitions to enter our Wonsie competition to win a pack of eight bodysuits valued at over $300.

feed her was a lot less convenient that handing her a pouch on the lap through the supermarket or in the pram on the way to school pick-up.

AND THEN … Sinchies came into my life. Sam from the Sunshine Coast in Queensland had the brilliant idea of creating a container like the pouches from the supermarket that could be filled, fastened, eaten from and then popped into the dishwasher and used again. Genius.

Sam didn’t stop there though and the full product list is extensive. Pop on over to www.sinchies.com.au to have a browse, read the litany of praise in the feedback section and place an order.

Or enter our fantastic competition on sourcekids.com. au/competitions to win a starter pack valued at $26.

Y Zooba Fitballs Choose your animal, hop on, and BOUNCE RACE! If you have more than one child in your house, you might find you are going to need more than one Zooba (and you’ll probably need one for Dad, too) or there’ll be fights.

Not only are Zoobas incredibly fun, soft and cute; they are also developmental aids for kids who need to improve muscle tone and development, core stability, balance, co-ordination and posture. Suzie Sinclair, director and owner of Zoobas Fitball for Kids, could see the potential of Zoobas as a therapeutic tool and so she organised for two Occupational Therapists and an Accredited Exercise Physiologist to trial them and report back.

The response was overwhelming: ‘The Zooba Fitball for Kids is a fun and interactive toy that aids with the development of deep core strength, pushes the developing vestibular system that increases proprioception and balance, and finally reinforces motor pathways that will remain with them for life.’

Kieren Nicholson – Accredited Exercise Physiologist (Exercise& Sports Science Australia) Pop on over to www.zooba. net.au for more information on how this fun toy can benefit your child and to order your Zooba Fitball for Kids. Source Kids readers will receive a 10% discount for the month of June – just use Sourcekids as the code.

59.95

$

If your child is eligible for the Better Start or Helping Children With Austism funding initiatives, have a chat with your child’s OT or Physio as the Zooba could be considered an appropriate resource to assist in reaching your child’s intervention goals.

If you would like to go into the running to WIN a Zooba, go to www.sourcekids.com.au/competitions to enter.

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JUNE 2014

Product review

DMO From Korthotics

W

alking. It comes so easily to most of us and yet it can be such a complex process to master. We have tried a lot of things to help and support Amy in her therapy and while most have helped a little, progress has been very stilted and slow paced. Amy has been pulling to stand and cruising along furniture for two years but just didn’t seem able to develop the core strength and confidence to step out on her own.

Julie, Amy’s fantastic physio, suggested we try a DMO (Dynamic Movement Orthosis), which is a custom-made dynamic elastomeric fabric orthosis, prescribed to address the wearer’s specific neurological and functional requirements. We booked into a clinic that Merrick and Catherine from Korthotics (the Australian distributor of DMO) ran to discuss whether it could be useful for Amy. They explained that a DMO can be used to manage abnormal tone, ataxia, dystonia, athetosis and improve proximal stability for limb function and has been used for a variety of neurological conditions in paediatric and adult populations. These include but are not limited to Cerebral Palsy, Rett syndrome, Angelman syndrome, spinal cord injuries, traumatic brain injuries and stroke.

After deeming it appropriate for Amy, they measured her

for the suit while Amy’s big sister and I chose the colours (purple and white with love hearts, if you’re interested) it would be made up in. About a month later we met with Merrick and Catherine at another clinic and tried the suit on Amy. It was slightly too long in the arms and they arranged to have it altered and then sent to my address.

The suit is very tight and was initially a little tricky to get on to Amy, so Catherine and Merrick met with me again to check it was fine. They were so kind and helpful, and made the whole transaction so easy, which isn’t always the case when dealing with providers.

Once the suit is on Amy, she really likes it. I dress her in it in the morning and she wears it all day. There are zips in the legs to manage nappy changing. In the evening, I remove the suit to bath her and wash the suit ready for use the next day. We call it her Super-girl suit.

And she is a Super-girl in it. She feels so much more stable in her core and her back is so much straighter. She is also evidently more confident and has taken her first independent steps. She can walk!

For more information please visit the Korthotics website www.korthotics.com.au or contact Korthotics by phone on (02) 9569 3672.

Leading orthotics company

Australian Distributor of DMO (Dynamic Movement Orthosis)

www.korthotics.com.au Phone: (02) 9569 3672

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JUNE 2014

Amy Willis in her DMO suit

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JUNE 2014

Health Debate

Medical Marijuana and Epilepsy

ILLEGAL OR USEFUL?

Support for the legal use of medical marijuana in Australia appears a long way off, with key authorities firmly against the proposal or cautious about welcoming such a controversial offering.

However, desperate parents are flouting the law to help their sick children. And they’re becoming more vocal as they encourage authorities to change their stance.

Cheri O’Connell is leading the fight for change - she’s become the public face of more than 100 people accessing an oral derivative of marijuana across Australia, claiming it’s a miracle drug that prolongs and improves quality of life.

She has two epileptic children and is adamant that without ongoing use of medical marijuana in the form of cannabinoid tincture, her daughter Tara, 8, would face death sooner. Tara has Dravet Syndrome, the most severe form of epilepsy, and was suffering between 65 and 200 seizures a day before accessing the tincture in January, 2013.

“I saw a change in alertness from day one and by day 10 she had stopped having them. On day 55 she had a 90 second seizure in respite but has been seizure free ever since,’’ Cheri explains.

“It has changed her life.’’ Tara’s story is not an isolated case.

“My son, Sean, who is 12, has GEFS+. He is 12 months seizure free since starting in March, 2013.’’

Despite the `feel-good’ stories of hope though, the national body representing medical professionals, the Australian Medical Association, stands by its policy that cannabis is a harmful drug and does not support its use.

The AMA says it is a health and social issue that causes harm to individuals and communities.

Given the growing momentum for more research into the product, an AMA policy advisor told Source Kids that it hoped to have an updated policy on cannabis available later this year.

“However, I can’t foresee any significant changes around the position on medicinal use of cannabis,’’ the advisor states.

Medical varieties of marijuana are legal in places including Canada, the US, UK and Germany, where it is commonly used by patients suffering nausea and vomiting associated with cancer.

JUNE 2014

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LATEST RESEARCH

Medical marijuana does not contain the halluceanegetic or psychotic element of cannabis - tetrahydrocannabinol, known as THC - but maintains its calming effect. It’s also been found to be beneficial for treating neurological disorders such as multiple sclerosis, spinal cord injury and some movement disorders, particularly where there is muscular spacticity or tremor.

Epilepsy Australia president Robert Cole says a human trial into medical marijuana, being conducted in the US (see breakout), is in its infancy, with the results “many years away’’. Mr Cole says he’s interested in seeing the results of the human trials and whether the anti-convulsant properties in the medication can be proven.

“It needs to be well researched,’’ Mr Cole says. “I am interested in the development of the trial and seeing the scientific results – saying that I welcome it is too strong a word’’.

One in every 100 Australians suffers epilepsy, with 30 per cent of those living with an uncontrolled variety of the disease that gives them a very poor quality of life. For Cheri, her life as a mum and carer of special needs children has changed since she started receiving the product for free from Mullaway’s Medical Centre – a registered New South Wales company.

The first official study into the benefits of purified cannabinoid on children with uncontrolled epilepsy, involves 150 patients aged between one and 18, and started earlier this year at UCSF Benioff Children’s Hospital, in California.

For one year, the patients will be carefully monitored with seizure diaries and blood tests to measure the levels of the patients’ other seizure medications in order to learn about safety, dosage, effectiveness, and drug interactions. A product ready for approval by Australian authorities is still deemed years away.

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JUNE 2014

Mullaway’s owner Tony Bower spoke to Seven News in a recent television interview, confirming that he mails the liquid product to around 100 critically ill patients for free.

He reportedly uses a cold extraction method that he says can’t be abused.

But Police don’t see it that way. They have arrested and charged Bower with cultivating cannabis. If convicted, and sent to jail, Cheri’s children will be without supply and she says she believes her daughter will die. As we go to print, Bower’s case is still before the courts.

Cheri hopes common sense will prevail and families like hers won’t be forced to the `black market’ for supply.

“We want the legislation changed. We’ve asked the government to change the law because hundreds of kids are dying and they don’t need to,’’ she says.

“We really didn’t think it would work. We never expected Tara to be living such a normal life.’’

Mr Cole says he is aware of the illegal use of products in Australia, and the miracle stories that have been told, but cautions that any use of marijuana is still illegal in all states.

“It is certainly controversial and new, but like any new medication, alternative or otherwise, it has to be fully tested and the evidence presented to the Australia Therapeutic Goods Administration for approval,’’ Mr Cole advises. “When and if it becomes evident that it provides a legitimate reduction in seizures then I am sure doctors will use it.’’

Australian Drug Law Reform Foundation president Dr. Alex Wodak AM, is confident change is inevitable. “It is a useful second line drug when first line drugs have either been ineffective or were accompanied by too severe side effects.

The first line drugs don’t always work ...and are much more expensive than medicinal cannabis,’’ he explains.

WHAT Medical marijuana, does not contain the halluceanegetic or psychotic element of cannabis – tetrahydrocannabinol, known as THC. It is illegal in Australia.

DEEMED BENEFITS Calming and anti-convulsant properties to help relieve epilepsy symptoms when anti-epileptic treatments, including drugs and a ketogenic diet, aren’t successful.

“The introduction of medicinal cannabis is likely to proceed in small stages. It is likely to be first introduced with narrow indications and only for adults. If this proves successful then the rules are likely to be made a bit more flexible, step by step.’’

Have you illegally given ‘medical marijuana’ to your ill child? Would you use it if was given approval? Do you support the US trials underway? Have your say: editor@sourcekids.com.au

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Cheri O’Connell with children Tara and Sean.

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JUNE 2014

Competitions

9

The Source Kids competitions page is bursting with great prizes to be won.

Springfree Trampoline

Zooba

Win a R54 Compact Round Springree TM Trampoline (including Australia-wide delivery), valued at $1,205, thanks to Springfree TM Trampoline. www.springfreetrampoline.com.au

Win a Zooba fun fit ball for kids, choose from mr moo, ruby the pony, rocky the horse, buddy the dog plus more valued at $59.95, thanks to Zooba www.zooba.net.au

DoBuggy Stroller

Win one of 2 copies of Reality Slap: how to find fulfillment when life hurts by Dr Russ Harris, thanks to Exisle Publishing

Win a DoBuggy stroller suitable for children with special needs up to 50kgs, valued at $425, thanks to DoAbility Kids www.doabilitykids.com.au

Wonsie Bodysuits 8 bodysuits of your choice in sizes 2 to 14 valued at over $300, thanks to Wonsie www.wonsie.com.au

Sinchies Starter pack with 4 pouches, funnel, lids and cleaning brush valued at over $20, thanks to Sinchies www.sinchies.com.au

Reality Slap 101 Games Win a copy of 101 Games and Activities for Children with Autism, Asperger’s and Sensory Processing Disorders, thanks to McGraw-Hill

Enter online at www.sourcekids.com.au/ competitions for your chance to WIN! Terms and conditions can be found on the competitions page.

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JUNE 2014

FEELING THE PRESSURE?

Six tips to help you cope As the parent of a special needs child, most of the time you are juggling appointments, diets, medication, schooling, work, siblings and well, life in general. That is all before you get home and have to manage your darling child with special needs and everything that comes with that.

You often underestimate the amount of pressure that rests on your shoulders – both that you place on yourself and that in which others place on you. Sound familiar?

Let’s look at the first part. As a parent we naturally put a huge amount of pressure on ourselves to be ‘perfect’. With a typical child there is always a perfect mother or father out there to live up to, but when you have a child with special needs, the stakes just seem to be higher again.

You feel like you need to constantly ‘do’ for your child to give them every opportunity to succeed in life. From the most basic of tasks that will allow them to lead an independent life like dressing, eating, drinking and communicating to giving them the skills to educate themselves for a promising future. We want to give them everything.

And then the second part, the pressure put on you by those around you. You’re probably seeing three or four therapists for your child, and while all of these therapists should be working together, often they are competing for your time, efforts and the importance you place on them.

Each therapist gives you homework to go away and work on with your child that you need to fit around all the other demands in your life.

Then there are the well-meaning friends and family who have opinions or suggestions on everything, or knows someone who said this is what you should do! Sound familiar? They no doubt have your best interests at heart, but their advice often feels like another stab in the heart that you should be doing more.

Now, we’re still looking for this ‘perfect’ parent that exists in his or her own eyes and in the eyes of others. It is important that parents of children with special needs cut themself a break and realise what a great job they are actually doing.

Here are our 6 tips for parents to manage the pressures of having a special needs child:

1

BE REALISTIC

There are only so many hours in the day, and life is about balance. We all want to do the very best for our children whether they have special needs or not. We can’t always fit everything in so think about what you can realistically achieve today, this week, this month and this year.

JUNE 2014

2

GIVE YOURSELF SOME ‘YOU’ TIME

We all need it, so take it. It might be a 5-minute cup of tea or a 5-hour shopping trip but take the time you need to remember who you are. Your child or children mean the world to you but it’s important to do small things for yourself whenever you can to keep balance in your life and make the time with your kid’s quality time.

3

PRIORITISE GOALS

Children with special needs often have many things they need to work on at one time including speech therapy, occupational therapy, physiotherapy, behavioural management, sleep therapy, medical procedures…the list goes on. Sit down and prioritise what is important to concentrate on in the short, medium and long-term and assign an A, B or C to these accordingly. A = this week, B = this month and C = this year. It may take a few goes to get the priority order right but it will help you focus on the things that matter, when they matter.

4

5

BE UPFRONT

It’s easy to get caught up in appointments with different therapists and specialists and agree with all of the activities and tasks that need to be done, but make sure you’re upfront with your therapist and tell them when you have a really busy week at work or have a heavy load in terms of other therapies or medical procedures to be undertaken. It’s not your homework in 10th grade, they do understand when you can’t fit it all in and they may be able to highlight the most important tasks to work on.

6

ASK FOR HELP

When you’re feeling the pressure, ask for help.

This might be from your partner, parent, sibling, friend or colleague. Everyone around you wants to help but often don’t know how. So ask your colleague if they would mind covering a shift or helping you with a project, and ask a friend or family member to take your child to an appointment or do a therapy-based activity with them so you can have a cup of tea. You’ll find a swag of willing helpers if you just ask!

CREATE A CALENDAR

It’s the best way to manage your time and the appointments and therapy you need to fit into your days. Schedule work time, school time, therapy time, appointments, meal times etc. and stick to it. Make sure your calendar also has some down time for you to just relax and enjoy some fun time with your child.

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If you have any other words of advice or tips to share to manage the pressure, please email us at editor@sourcekids.com.au or comment online.

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JUNE 2014

SALT

SENSATION An ancient healing technique is slowly developing a fan base in Australia.

Salt therapy rooms are still in their infancy in Australia, but they are gradually growing in popularity as an alternate therapy for people with a range of conditions, including children with special needs.

Even some elite athletes, including AFL footballers, are using the rooms in a bid to shorten the recovery time between games.

There are around a dozen specialist salt clinics across the country, and based on the growing usage trends, many more are expected to be established in the near future.

While some health professionals question the health claims of the operations, those at the `salt-face’ swear by the benefits.

Two of the newest establishments - one in Victoria, the other in Queensland - were started by owners who had heard about the treatments but struggled to gain access close to their homes; so they decided to build their own business from the ground up.

Salt Life Halotherapy Clinics started operations in August, 2012, seeing 19 patients in the first month. ``Today, just 19 months later, Salt Life boasts over 820 clients and in excess of 500 very loyal members, who use Dr Salt therapy room

our services regularly, to aid with their conditions and treatment,’’ says Kellie Edge, from the Bribie Island facility.

Melbourne-based Dr Salt has been open for almost a year and has seen 5200 patients during that time, treating patients from 4 to 90 years old, with problems ranging from behavioural difficulties such as ADD through to Autism, Down Syndrome and Cysitic Fibrosis.

But, it was a much more common medical condition that first led Karin and Yaniv Daniel to establish Dr Salt.

Their daughter Eden suffered from chronic ear infections and antibiotics failed to deal with the issue. She suffered from a fluid build up in her ears, eventually leading to minor hearing problems.

It was then that they sought inspiration from their homeland, Israel, where there is a salt therapy centre in every suburb.

Salt therapy makes use of the natural healing properties in salt to detoxify the body and improve its functions.

Proponents say that tiny salt particles enter the respiratory system, cleansing and detoxifying the body, improving breathing and reducing the effects of respiratory illnesses such as asthma and bronchitis. It’s also a natural treatment for skin ailments such as acne, psoriasis and eczema. ``I was surprised to have trouble tracking down a facility in Melbourne. It seemed crazy that Melbourne, the allergy capital of Australia, was unexposed to the benefits of this holistic and ancient healing modality,’’ says Karin Daniel. ``This treatment option has been used for years in Europe, Russia, Canada, the Middle East and the USA – it has been voted the number one natural treatment for asthma in the US.’’ Unable to find a facility in Melbourne, they decided to build their own, using salt bricks excavated from mines in the city of Soledar, located in the Donetsk region of Ukraine. ``Soledar mines hold one of the purest salt deposits in the world and is the biggest one in Europe. Its salt is unique, because it has no impurities. (This salt contains 98% sodium chloride and 2% magnesium).

JUNE 2014

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Children experiencing the salt therapy room at Dr Salt.

``It was created 270 million years ago when the salt from the shallow Permian Sea, dried by the sun over time, accumulated on the ground in enormous white layers. ``As time passed these layers of salt then gradually disappeared under a thick layer of soil.’’

So, while most of us are warned not to consume too much salt in our diets, the Daniels are espousing the virtues of salt rooms, to help cleanse and detoxify the airways.

Patients sit and play in the salt rooms, which have a very high concentration of negative ions, for about an hour each appointment. ``Negative ions significantly decrease airborne viruses and bacteria; clear the air of dust, pollen and other potential allergens,’’ Mrs Daniel said. ``Once they reach our bloodstream, negative ions produce biochemical reactions that increase levels of the mood chemical serotonin, helping to alleviate depression, relieve stress, and boost daytime energy. ``Salt also acts as a decongestant, reducing inflammation, production of mucus and widens the airway passages.’’

As for Eden? ``Twelve months later, she is thriving. Having passed a full six months without the monthly ear infections that used to plague her, her hearing and responsiveness has improved one hundred fold,’’ Mrs Daniel said.

Back up on Bribie Island, and Salt Life is reporting some rewarding stories. ``The calming environment and the unique atmosphere has produced some amazing results from children with severe skin irritation, right through to autism,’’ informs Kellie. ``We have a special needs child that is obsessed with birds, all sorts and shapes, so every treatment day we ensure that the room contains colouring-in pictures, toys and visuals of her favourite birds, the smiles on this young girl are amazing.”

``Her mother reported better sleep patterns, calmer behaviour and most importantly her medication usage stabilised. It just makes it all worthwhile, when the family benefits as well as the patient.’’

Those in the salt business say they are not, nor want to be referred to as, the next “miracle” treatment. ``Salt therapy is not a cure, nor does it replace current medical advice or treatment,’’ Kellie says. ``It’s a complementary and natural therapy that assists with your current medications to relieve the symptoms and support your existing clinical treatment.’’

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JUNE 2014

Product Review

TRAMPOLINES

A Springfree™ Trampoline R54 Compact Round (including Australia-wide delivery) valued at $1,205.

Go to sourcekids.com.au/ competitions to enter.

Safety How to improve safety tips on the trampoline at home

Trampolines are fantastic fun. I get it. And they are a brilliant therapy for a vast array of disabilities and disorders. Yup, I know that, too BUT I still feel slightly uneasy when my kids want to play on one. Everybody knows somebody who broke a bone on a trampoline.

Despite my misgivings, my girls do use trampolines and my elder daughter even received one for her birthday a couple of years ago. It has a net, they never jump unsupervised and I am the boring mum yelling ‘one at a time!’ so they’re safe, right?

Nope. Researching this article has been an eye opener even for me. Trampolining is more dangerous than I had imagined with over 3000 reported cases of injury in Australia in a year. That’s over eight a day.

SPACE: a trampoline should have at least 2m on all sides that are clear from hazards and obstacles and have a minimum overhead clearance of 5m.

PADDING: if you have an older trampoline, consider getting padding retro-fitted to the voluntary standard.

Contact the store or manufacturer for information.

MAINTENANCE: check regularly for tears, worn areas and sun exposure. Inspect the frame and springs for rust and deterioration.

The Australian Standard for trampoline safety is voluntary, with companies expected to comply as much as possible BUT when consumer watchdog organisation group, Choice tested 12 of the leading brands/models in their most recent round of testing, 11 didn’t meet the standard. The twelfth and only one Choice would recommend was the Springfree Trampoline R54, whose revolutionary design reduces product-related injuries by 90%.

SAFETY NET: most trampolines come with a safety net and we strongly recommend you only use the trampoline with this net installed. Make sure it is not suspended from stiff or rigid poles and look for one that is assembled on the inside of the padding system.

Nicole Grant, Gateway Therapies owner and occupational therapist says: “A trampoline with concealed springs and a surrounding net (like Springfree Trampoline) is safest for kids, especially those who have impaired judgment or coordination difficulties. A trampoline with these safety features will also help to increase enjoyment of this therapeutic activity.

SET CLEAR SAFETY RULES: establish these early. (eg: ‘one person at a time,’ ‘bare feet only’, ‘do not use when wet’).

C 100

M 0

P: 1800 586 772 www.springfreetrampoline.com.au

Y 10

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SECURE THE TRAMPOLINE: place it on an even surface and if possible anchor the legs of the trampoline to the ground.

SUPERVISION: Ensure use of trampoline is supervised at all times.

Suggestions from CHOICE. To read the complete safety checklist, go to: www.choice.com.au/trampolines.

“Introducing trampoline play to your child’s daily routine can have many benefits. But it’s important to remember that supervision is an absolute must. Children with special needs should be well supervised. Consultation with an occupational therapist or physiotherapist can assist you to ensure that this is a developmentally appropriate activity for your specific child,” said Ms Grant.

Having the ‘world’s safest trampoline’ along with adhering to safety guidelines at home can make for a happy, safe trampolining experience for all.

Trampolining is considered so useful as therapy in some cases that Better Start early intervention funding has been approving funding to purchase Springfree trampolines.

15

JUNE 2014

BURN BRIEFS 824 people and 64 dogs made their way 320m up Balfour Street on March 16.

100 volunteers donated 8 hours each.

Steep Challenge –

$15,000 was raised from donations and registrations fees.

All money raised by the Balfour Burn will be spent in Tasmania supporting children from birth to 18 with special needs.

BALFOUR BURN

Building awareness of the needs of children with disability and raising funds for life-enriching therapy services provided by St Giles is a constant challenge.

The state’s largest children’s charity, St Giles offers therapy services to 6000 children across Tasmania. Finding new and interesting ways to raise money and profile is difficult, says St Giles communications and fundraising manager Danielle Blewett.

And so was born the Balfour Burn.

On March 16, nearly 1000 entrants made their way up a 320m, one-in-20 graded hill in Launceston.

“The Balfour Burn used Tasmania’s wild side – a love of extreme sports and our sometimes extreme landscape – to develop an accessible and fun community challenge in a hard to conquer inner-city location,’’ Danielle explains.

“The Balfour Street hill is used by elite athletes as a training run and is gruelling.’’

Fourteen divisions were contested, with sections for pets and prams, elite runners, wheelchair athletes and some of Tasmania’s specialist hill climbing cyclists including Avanti’s Ben Mather and Ben Grenda. The event’s infrastructure and marketing were sponsored and entry fees raised $15,000.

“People are very sentimental about St Giles and most people will know someone who has used our services

A competitor takes on the prams division.

during its 75 years,’’ she says.

“The sentimental spot for St Giles and its multigenerational reputation for highly skilled and passionate child allied health staff are two indisputable influencers when Tasmanians consider which charity they will financially support. Locally, we are trusted and understood to be a frugal and prudent organisation whose focus is on paediatric health excellence.

“Nationally, we are viewed as a leader and innovator within paediatric allied health services – we occupy an exciting place in the child health sector.’’

Danielle admits the challenge is moving people from love and respect for St Giles to financial support.

“What we have learnt is that young families who have used our services for early childhood physiotherapy, occupational therapy or speech pathology are very vocal advocates for St Giles,’’ she says.

“Many of these families are environmentally aware and have a strong sense of social responsibility. These are the families who give us faith in our future. They are also health conscious and have active lifestyles so the Balfour Burn appealed to their social conscience and as well as their active lifestyle choices.’’

The event will be held again next year.

16

JUNE 2014

BETTER

START?

C

hildren registered with Better Start can access up to $12,000 (maximum $6,000 per year) to pay for early intervention services. Families living in outer regional or remote areas may be eligible for an additional one-off payment of $2,000.

Children are eligible for the Better Start program if diagnosed with one of the following disabilities: • Cerebral palsy • Deaf/blindness • Down syndrome, including mosaic Down syndrome • Fragile X syndrome with full mutation • Hearing impairment • Sight impairment • Prader-Willi syndrome • Williams syndrome

• • • • • • • •

There are over 5,000 children and their families currently registered nationally for the Better Start Initiative program.

Angelman syndrome Kabuki syndrome Smith-Magenis syndrome CHARGE syndrome Cornelia de Lange syndrome Rett’s Disorder Cri du Chat syndrome; or Microcephaly

Each disability included in the Better Start program is subject to an eligibility threshold. These thresholds have been determined by the Department of Families, Housing, Community Services and Indigenous Affairs.

Children with an eligible diagnosis must register for Better Start before they turn 6 years old. A child will have until they turn 7 to access funding.

JUNE 2014

17

Services include: • audiology • occupational therapy • orthoptics • physiotherapy • psychology; and • speech pathology.

It is intended that Better Start will complement existing Commonwealth and State and Territory government services.

The role of a service provider is to deliver evidencebased early interventions for eligible children focussed on contributing to the child’s ability to successfully transition to school.

Up to 35 per cent of funding can be used to purchase resources such as equipment or communication aids.

This equals a maximum of $4,200 overall, and no more than $2,100 per financial year.

Early intervention services for children under Better Start must: • b e designed in collaboration with the family and include family involvement; • f ocus on achieving outcomes that will prepare the child for transition to school or to another setting; • p rovide a connection between the early intervention services or program and the next stage for the child, whether the transition is to school or to another therapeutic or special education setting;

• f amilies and carers have increased choice of early intervention services;

• e nsure that the child’s functioning before, during and at the end of their treatment plan is assessed according to the requirements of the Fee-For-Service Funding Agreement; and

• r esponsive and appropriate services are accessible for eligible children, according to their early intervention needs;

• w here possible and appropriate be delivered using a multidisciplinary approach.

• c hildren participating in the program are better prepared for the transition to school; and

The expected outcomes for eligible children and their families and carers are:

• i ncreased expertise among private early intervention specialists in delivering services to children with one of the listed disabilities.

• i mproved access to early intervention treatments and services for eligible children;

Contact Better Start on 1800 242 636 and make an appointment for your child’s assessment. Your child’s eligibility will be assessed and confirmed and you will then be given information about accessing services.

• i mproved parent/carer awareness about options for assisting their child; • i mproved resilience of families in managing the effects of child’s disability; • i mproved ability of the child to participate in the community;

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Better Start Early Days are also running free workshops for parents around Australia, visit www.betterstartearlydays.net.au for details.

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JUNE 2014

BETTER START IN

PRACTICE

AJ an

Dekl

Michael and Fiona Young have two children with special needs and their younger son, AJ, receives funding through the Better Start initiative. They have used the the funding to pay for the therapy that AJ receives from The Therapy Centre on the Sunshine Coast and had funding approved for an iPad and Proloquo2Go to use as an alternative communication device, as AJ is almost entirely non-verbal.

They plan to apply to use the funding to purchase a walking frame for AJ this year.

Young Deklan Phillips has benefited from the Better Start funding also. The almost 6 year old has Bilateral Frontal Polymicrogeria and has been able to access speech therapy, apps for his iPad including Proloquo2Go and also a modified bike to assist in his physical therapy. Mum Dearne is thankful for the Better Start funding that has allowed her to give Deklan the things he needs that other funding doesn’t cover.

Mia

Peta and Matt Perrie are extremely grateful for the assistance Better Start has given their daughter Mia who has Angelman Syndrome. They have used the funding to purchase a bike, scooter, trampoline and the communication software Proloquo2Go, as well as water based therapy and speech therapy with the use of an iPad.

JUNE 2014

TOP 10 TIPS for a stress-free haircut 1

6

No surprises!

Ensure your child knows what will happen. Depending on the level of understanding your child has, this could include a visit to the salon or barber before the actual ‘cut’, watching someone else have a haircut. Or, it might include hair cut play at home. A Social Story is helpful for some children – that is, a story about what will happen, which reinforces that ‘you’ll be ok’. (Ask your OT to help with this).

2

Choose the best person for the job

This could be someone who specialises in kid’s haircuts, or provides a mobile service and can offer haircuts at your home.

3 A rrive with your child in a ‘just right’ level of arousal

Don’t underestimate the power of sensory preparation, before you go. If you know your child is calm after a good 10 minutes of a heavy workout on the trampoline, make sure that happens before you go. You may have a little one who is a real ‘chewer’ – don’t forget their chew toy in the car, and take it into the salon or barber. If your child is unhappy in the car but loves their stroller, it may pay to park a little further away, to ensure the stroller ride helps get your child into a calm state before you arrive.

4

Take their comfort toy

Perhaps the dummy or pacifier is usually reserved for bedtime at your place – if haircuts are a stressful outing for you, consider some leniency and allow it to go along for the ride! Chew toys are great calmers, or for your child perhaps it’s a weighted toy to have on their lap, or simply stroking the satin edge of their favourite blanket. Remember the power of deep touch pressure in calming – perhaps a weighted toy or lap pad/shoulder pad would help.

5

Predictability

Talk! Tell your child what will happen, respecting the level of their receptive language/understanding. For some children this could include counting or using a timer. For example, one minute of cutting, take a break. (Or one minute of cutting and have a food reward!) Remember if your child is showing stress, their level of understanding decreases – so reduce your words, keep sentences simple.

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Take the stress out of having your child’s haircut, with these top 10 tips from Robyn Duregger.

Use firm touch

Light ‘tickle touch’ is the sensation children often find the most difficult to cope with.

So be firm – it’s natural if the child is pulling away, to try to be gentler. This is usually not helpful for a child struggling with light touch. Using a mirror also helps reduce the incidence of unexpected touch, which is often a trigger.

7

Reward

Use rewards at a frequency appropriate for the child’s level. For some, this might simply be the promise of a ride on the merry go round at the shopping centre afterwards. For someone younger, it may be a comforting hug from a parent every few minutes.

Know your child and be prepared with the right reward, at the right time to catch them!

8

Block out the noise

For some children, the noise (lots of people, vibrating clippers, snip snip of scissors, background radio) is more of an issue than the sensation of light touch. Grab those headphones! Grab the iPod/iPad/portable DVD machine! In some situations Dora and Thomas are the best characters for the job! Be sure you’ve tried this before and it’s loved by your child – the hairdresser is not the place to pop headphones on your child for the first time.

9

Consider the sights and smells

For other children, the different (and at times extreme) perfumed smells at the salon may make them feel physically nauseated.

The olfactory system, or sense of smell, communicates directly with the limbic system in the brain. That means it has a powerful and immediate influence on emotions, both positive and negative. Have on hand, a familiar and enjoyable smell – once again this could be ‘blankie’ and its familiar smell, or some leaves from a lavender or basil bush the child has outside their window at home. And for others again, it’s the bright lights, or fluorescent lights that are irritating. Is there a quieter, slightly darker spot in the salon to sit?

10

Keep your cool!

Children notice and respond to our emotions. It’s not enough to say ‘you’re doing fine honey’ if your body and face, and that of the hairdresser, are showing sheer terror at what could erupt any second!

Robyn Duregger is a Paediatric Occupational Therapist and Clinical Director of North Coast Therapy – a private occupational therapy provider located on the Sunshine Coast, Queensland. She has worked with children and families for over 20 years in Australia and the United States. Robyn believes that positive relationships with her young clients and their families, together with problem solving for practical solutions, are the keys to great outcomes for kids.

Visit www.nctherapy.com.au

www.facebook.com/nctherapy

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JUNE 2014

The SOS approach to feeding Created by Dr. Kay Toomey, a paediatric psychologist who has worked for over 20 years with children who don’t eat, in conjunction with colleagues from a range of disciplines, the Sequential Oral Sensory (SOS) approach to feeding is designed to assess and address all the factors involved in feeding difficulty. A transdisciplinary program based on the idea that the child is always right, the SOS Feeding approach looks at the child and works out the reason for their feeding difficulties and bases the treatment program on that.

The core concepts of SOS Feeding approach are that: • traditional myths surrounding eating can interfere with the understanding and treating of feeding problems; • that Systematic Desensitisation should be the first method used when treating a child with feeding difficulties; • that following the usual route of developmental feeding milestones is preferable; and • allowing food choices to naturally achieve sensory and oral skill progression.

The SOS Feeding approach debunks a number of accepted myths surrounding mealtimes and feeding including that ‘if a child is hungry they will eat. They will not starve themselves ‘(Mason et al., 2005.) and that eating is easy and the body’s first priority. It introduces the idea that eating is the most challenging sensory skill to master and when we put pressure on our children to eat, we cause them to feel anxious, which releases adrenalin that supresses their appetite and puts the body into react rather than learning mode.

The SOS Feeding approach focuses on systematic desensitisation which breaks down each part of the

eating process into steps: Tolerates, Interacts With, Smells, Touches, Tastes and then finally Eats. Each one of those steps is then broken down again so that every tiny progression is mastered before moving forward. Children receive positive reinforcement for every level of food interaction.

The approach also focuses on social modelling and the ritual of eating and meal times. Children are encouraged to sit and remain at the table for the duration of the meal.

It is recommended that SOS Therapy is presented in the form of either group or individual, 12 week, 45 minute sessions with an Occupational Therapist to manage the sensory aspects and a Speech Pathologist to manage the oral intake and management. A consistent plan for each session begins with five minutes of sensory preparation, transition, starting routine, feeding and clean up. Children are NEVER forced to eat.

The SOS approach to feeding may be an appropriate therapy for your infant, child and/or adolescent with or without a developmental delay and/or disability if they: • have a restricted range of foods they can tolerate; • refuse entire categories of food texture/nutrition groups; • have to eat a different meal from the rest of the family; • are underweight or at risk of becoming underweight due to limited food intake; • find mealtimes distressing; or • are transitioning from having a feeding tube.

Dr Kay Toomey and Dr Erin Ross will be returning to Australia in October to present a three-day SOS training and one-day special interest workshop aimed at health

JUNE 2014

care professionals who deal with children with feeding difficulties. Go to www.feedingworkshops.com for more information on the course.

We asked Heidi Hoskings, a Speech Pathologist trained in the SOS Feeding approach for her opinion:

How successful do you find the approach?

SOS is a very effective way to help children to eat more variety and thus volume in their diet. Ideally the program runs weekly sessions and has parent training involved to help carry over what is learnt in the group, to home.

Results range from a child being able to handle smelling a particular food, to being able to handle food cut in different ways, to a child being able to touch or eat different textures. Some children make gains very quickly, whereas others who may have been on a nasogastric tube or gastrostomy may take much longer to get to eating more variety.

How long do you need to persevere before you start seeing results?

SOS works by desensitising a child to the different sensory properties of foods in very small steps. You should be able to see some success fairly quickly. It might be that your child can handle just looking at a food for a couple of seconds or that they will touch an undesired food with a fork or even that they will touch it by throwing it into the bin. The therapist should be able to help you identify the success your child is having, by pointing out these

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small steps. This way, you will be able to see that they are moving closer towards eating the food, the best success!

Is there any type of child/diagnosis this therapy works best for?

SOS works well for any child that is struggling with the sensory properties of food, be it smell, taste, texture or even sight and sound. This is particularly useful for children with ASD but also many other diagnoses, particularly those who have had a traumatic history with feeding early on.

SOS also works for those children who have fallen into habits, which affect the type or amount of food they eat.

As this program focuses on appetite, it is also useful for children who are failing to thrive or who are never very hungry, thus making it hard to introduce new foods. Most importantly, it helps to educate any parent that has stress around mealtimes, which could possibly be every parent!

Do you use this approach in isolation or does it work well together with other therapy?

Because the SOS program is quite intensive, it is best to just focus on feeding goals through this. It covers therapy with the child in the group, so the therapist can see exactly what the child is doing and it also allows time to educate the parents on how to continue this on further at home.

No other approach to feeding has been shown to deliver results as well as SOS.

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JUNE 2014

AUTISM

Explained Light It Up Blue is a global campaign that sees thousands of iconic landmarks, cities and towns around the world turn blue on April 2 to recognise World Autism Awareness Day. The campaign highlights the pressing need for greater public education and awareness of autism in our community, says Autism Awareness Australia CEO Nicole Rogerson.

Nicole, a mother of an 18 year old autistic son and an autism campaigner with 15 years involvement, is highly critical of the situation still facing the one in 100 people affected by Autism Spectrum Disorder across Australia.

“I wish I could say it is much better now and that parents get things handed to them on a silver platter now compared to when my son was diagnosed, but unfortunately I still see families struggle for good quality information and assistance,’’ she says.

Nicole believes the problem is systemic - she says there is no qualitative research into ASD and there isn’t adequate early intervention support for those who don’t slip through the cracks.

“US figures released in March showed 1 in 68 are diagnosed, a 30 per cent increase on their last survey,’’ explains Nicole.

Bridges and buildings across the world turned blue earlier this year to help raise awareness for a common disorder that’s still struggling for support to help those most in need.

“It is an absolute mess for a condition that affects so many children and has a pervasive effect on the whole family.’’

Autism is usually easily diagnosable by the age of two.

Classic signs include delayed speech, lack of eye contact and interaction and repetitive behaviours.

Autism Awareness Australia is doing its best to fight for better outcomes. Nicole says access to information can make a real difference. “Unfortunately getting help is very dependant on the wealth of a family,’’ she states.

“The Australian Government’s best practise guidelines for children with autism says they need a minimum 20 hours a week intervention but they only fund enough for one hour - so only the kids with money can get adequate support.

“I have been involved in the area for 15 years and there have been many little improvements but no one significant improvement because politically it crosses health and education and family Autism is a complex neurobiological disorder that services so there is no one portfolio to have control of it. typically lasts throughout a person’s lifetime. It

What is Autism?

is part of a group of disorders known as Autism Spectrum Disorders (ASD). People with ASD have problems with social and communication skills and often have behavioural challenges. Many people with ASD also have unusual ways of learning, paying attention, or reacting to sensations. In most cases its causes are unknown. Today, 1 in 100 individuals is diagnosed with autism.

“We don’t know exact figures in Australia because we have bad qualitative research and no national register, which is just terrible, so the best we can go by is the ABS data which puts it at 1 in 100. Out of every four, three will be boys and one will be a girl.’’

To add further concern, Nicole says there is still no adequate research on the `why’ - what really causes the disorder.

“All we know is that it is somehow genetic,’’ she says.

“Families can access $6000 a year for two years until they reach the age of seven and that is enough to pay for one hour of intervention assistance a week, which will hardly help on its own.’’

It’s hoped the government’s National Disability Insurance Scheme will assist in a more structured way, but Nicole

says that is still years away.

“Outcomes are drastically different depending on when you start intervention. If you receive behaviour and speech intervention early, children can go on to live rewarding, very independent lives.’’

So while the global day of action lights up the world blue, Nicole is determined to keep fighting for better outcomes so that she is no longer blue in the face.

JUNE 2014

Nicole and son Jack competed in the City 2 Surf.

N

icole Rogerson left a career in Marketing and Public Relations in 1999 when her son was diagnosed with autism. In 2003 she established The Lizard Children’s Centre to provide early intervention programs for children with Autism Spectrum Disorder (ASD).

Nicole is also the founding Director and CEO of Autism Awareness Australia, a national not-for-profit organisation, which she set up in 2007.

The organisation combines her passion for providing national education programs that promote understanding of ASD, and supporting and advocating for the needs of individuals on the spectrum and their families.

23

NICOLE’S TOP FIVE TIPS

1 2 3 4 5

arly intervention means early intervention. You E need to find people to help immediately after diagnosis, regardless of your shock and grief.

Children with autism can learn and learn a lot.

They can have a great future but outcome equals effort.

Make sure you do your research. Look at good websites such as www.autismawareness.com.au or the government’s Raising Children Network – www.raisingchildren.net.au Reach out and meet other parents. It is important to look after yourself as well and make sure you get enough support because it is exhausting.

Remember it is a journey, not a sprint.

Keep in mind you might need to parent your autistic child differently to your other children. Set aside your pre-conceived ideas about parenting and seek expert advice to learn how to teach them.

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JUNE 2014

Speak to your doctor if, by the end of 12 months, your child: • D oes not pay attention to or is frightened of new faces • D oes not smile, does not follow moving object with eyes • D oes not babble, laugh and has difficulty bringing objects to the mouth • Has no words • D oes not turn head to locate sounds and appears not to respond to loud noises • D oes not push down on legs when feet are placed on a firm surface • D oes not show affection to primary care-giver, dislikes being cuddled • Does not crawl, cannot stand when supported • D oes not use gestures such as waving or pointing Autism Assistance Nicole Rogerson Autism Awareness Australia CEO

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Nicole and her son Jack, who has Autism.

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JUNE 2014

THERAPY PLANNING

for your child In 2012, Rosenbaum and Gorter published a fantastic article regarding the “F words in childhood disability”.

These six words create a framework for therapy planning for children, focusing on their every day life and their strengths, rather than a deficit model.

I have seen children with very complex needs who have these six words taped to their wheelchair, with a reminder to medical and allied health staff to focus on the child and family as a whole. For example: Will this help me have fun? It does not need to be done ‘normally’. My family are the most important people to me, so listen to them and respect them.

One adolescent with Cerebral Palsy noted that while he was now able to play soccer, he had spent seven years learning how to walk ‘normally’ while the other children had seven years of skill development. Despite the physical ability to play soccer, his efforts to participate were impeded by lack of skill development relative to the other children. He told me he wished that some of his therapy time had been spent actually learning to play soccer so that he could play with his friends.

Parents know their child better than anyone, and know what fits best for their family. Know that when you direct therapy planning to these six words, to fit your family and your child, you are doing what the evidence tells us works best. You do not have to attend therapy to work on cutting skills if your child is unlikely to ever want or need to cut with scissors, just because a therapist tells you it is important. Be proud and stand strong. Let’s focus on their strengths, childhood and planning for the future instead.

Balancing family life, childhood and therapy can be a challenge. Will your child ‘miss out’ by stopping a therapy for a period of time?

How do you choose therapy goals and priorities?

Fun Is this something your child enjoys? Can we enhance their strengths? What does your child do to have fun, and enjoy being a child?

Function What does your child need to be able to do?

Family How does your child engage with the family?

What would make the biggest difference to you as a family? It might be working toward being able to go out for a meal, or for your children play together outside. Does therapy support your family or add to the challenges?

Friends How can we support your child to develop and sustain friendships?

Fitness This has an enormous impact upon the health and well being of any person. How does your child keep fit? It might include hydrotherapy, bouncing on a trampoline, learning to ride a bike or joining the local soccer team

Future Does this help prepare my child for the future?

Dr Fiona Jones Occupational Therapist, OCC Therapy www.occtherapy.com.au

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JUNE 2014

Mainstream vs Development Schools One of the most regular questions that I’m asked regarding my preschool aged daughter who has a disability, is where I will be sending her to school?

I live in regional Queensland and have the option of our local state school (that my elder daughter attends), a fairly local state school with a special education unit (that has an early childhood development program that she already attends) and a development school that’s about half an hour away.

I want my daughter to be able to attend the school her sister goes to and to be a known and valued part of our community. However, I have heard that a child with special needs was turned away as he isn’t toilet trained and they don’t have the facilities, or staff to change nappies.

It wasn’t until the 1970s that, due to the theory of ‘normalisation’, Australian schools began their policy of inclusion. This saw mainstream schools offering children with special needs the opportunity to be schooled within a mainstream environment but often with a modified curriculum and segregated facilities available for those with a severe disability. Now the policy of integration has developed further to mean that every child should be able to access their local school and be taught alongside their peers, with the expectation that there will no longer be a

difference between mainstream and special education. It also suggests that each local school will be able to provide the appropriate education and facilities for every child regardless of their ability.

Unfortunately our actual model of mainstream schooling hasn’t changed along with our utopian views. The reality is that mainstream schooling may not actually offer the best possible outcome for our most vulnerable.

Queensland LNP Senator and long-term disability reform advocate, Sue Boyce, has been vocal in her opinion that mainstream schooling needs to be the only option for children with special needs. In a speech made on March 21 2011 she called for the closure of special schools and the redeployment of those resources into supporting children with disabilities in the mainstream system.

Senator Boyce, who has spoken with hundreds of teachers, academics and parents and run a public forum in Brisbane in 2009 titled ‘Making Inclusive Education Work - is it the Will, the Skill or what’s in the Till’, has said: “It’s my view that we won’t fix education until we abolish special schools. If mainstream schools had no option but to accept children with disabilities, they would concentrate on how to make it work, not how to avoid getting involved.“ In 2002 Norwegian disability advocate, John Sandvin, wrote: “When a child goes to a special school, it is not because the child has an intellectual impairment, but because the community school does not welcome children with an intellectual impairment.”

27

JUNE 2014

In Australia, the Disability Discrimination Act makes it unlawful for anyone to be discriminated against because of his or her disability. It also expects education providers to make reasonable adjustments so as not to discriminate against anyone with a disability. However, if the adjustment were to cause unjustifiable hardship, the education provider can refuse to make it. This means that any public school, while obliged to take your child with special needs, can tell you that their requirements cannot be reasonably met by the school – leaving you without the option of a local school position.

While this is an interesting point to debate, and the human rights issue of all children being able to receive the same education and opportunities is important, ideology cannot stand ahead of practicality when it comes to the day-today reality of schooling our children with special needs.

Are mainstream schools able, and are they even aiming, to provide the best education for all students? I know that I don’t want to send my child to a school that says they can’t cater for her. I also don’t want to send her to a school that is being forced to cater for her because there are no other options available.

While putting this article together I found a piece by a Dr Kirsty Young, a senior lecturer in education at the University of Technology, Sydney. She was looking at what a school that served all students equally well might look like:

Ryan meets The Wiggles.

The principal advised them to have a look at a special development school for Ryan and so they did and moved Ryan to one with a Prep – Year 12 campus that has 6-8 children per class with two teachers, different therapies (like speech and music) available and all government funding is applied for by the school and then pooled to make the most of the resources.

Ryan is thriving in his new environment. When he started school he was in nappies, non-verbal and having meltdowns on a daily basis. Now he is toilet trained, talking and loves his school. His parents are thrilled with the school and think it’s the best decision they could’ve made.

‘Consider a school built around learning centres, where teams of specialist educators work together to support all learners to reach their potential. Incorporating a technology centre, where some students are developing ‘’apps’’ while others are learning basic internet search techniques; a literacy centre, where some engage in text analysis while others learn sight words; an environmental centre, where some workshop sustainability issues while others learn how to use public transport; and so on.

Centres that do not exist solely to educate children from 9am to 3pm but, potentially, are used 24 hours a day and seen as essential community spaces. Centres where students with special educational needs are truly incorporated, and valued, as part of a learning community that extends into the broader community.’

William running with assistance from his teacher at his school’s cross country.

Now that’s a school I’d like to send both my children to.

I

spoke to Michael and Jacalyn, who live in Victoria, about their son, Ryan, who is eight and has autism. Ryan was enrolled to start prep at their local Catholic school, which is mainstream but has a good reputation for teaching children with special needs. Michael and Jacalyn had discussed Ryan’s diagnosis with the school and the need to apply for funding for extra assistance. Three weeks before the start of term (after having attended all the transition days) the school contacted them to say they could no longer take Ryan, as they couldn’t get the funding.

In a mad scramble, they managed to enrol Ryan to start at the local Primary School, where there was no funding in place for an aide and the teacher just wasn’t equipped to deal with Ryan by herself, especially as he liked to run away. The school tried really hard to do their best for Ryan but he was just not coping with the full school load and had to leave early every day.

M

ichael and Fiona Young have two boys, both with special needs. Neither boy has an allencompassing diagnosis.

William was born with a compressed spinal cord at C1 and had his spine fused from his skull to C3 when he was three. He had a halo on for 18 months. He has gross and fine motor delays and has Cerebral Palsy-like issues with high-tone in his legs, which is why he wears AFOs. AJ has hearing and vision loss and failure to thrive. He has severe development delays, is unable to walk and has very limited speech.

William attends a private Anglican school, where he is assisted by a Teacher aide. He also receives speech, occupational therapy and physio through the school. He is popular and held up as an example and inspiration to the other children and although he has an IEP he is managing and thriving in the supportive environment.

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L

astly, I spoke to Melita Bloomfield, mother of Jasmine who has Angelman syndrome. Jasmine attends their local school, which also has a special needs unit.

Jasmine had attended the pre-school ECDC program at the school and Melita decided to keep her in the mainstream school as she felt that Jasmine would be influenced to mimic the behaviours she was surrounded by and that she would be motivated by the other children in the mainstream setting and would develop her social skills and abilities by emulating them.

Melita couldn’t be happier with her decision – Jasmine has been learning ball games at school and because she is expected to be quite independent, she is learning to do things like finding her lunch bag in the fridge and taking it outside for breaks.

Melita is uncertain whether Jasmine will remain in a mainstream setting for her entire school career, but for the foreseeable future she definitely will do.

AJ Young travelling to school on the bus.

AJ requires too much care for the school to manage, so Michael and Fiona approached the local state school, where they were told that they did not have the facilities or staffing to cater for AJ. They decided to send AJ to the area’s development school, which also meant a long bus journey every morning and afternoon for AJ. Michael said that he was so worried about what the school would be like, mainly because of the stigma attached to special schools but his anxiety was unfounded. AJ loves the bus trip and is in a class with three other children and two teachers. They have a pool and he receives all his therapy there. He is making friends and is very happy.

We would love to hear your stories and experiences with mainstream or developmental schools, email us at editor@sourcekids.com.au or comment on this article online.

Jasmine Bloomfield

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GETTING TO THE ‘ROOT’ OF DEVELOPMENT Think of your child as a tree. The roots must be healthy, strong, and well fed in order for the tree to even begin to grow. Only then does the trunk of the tree begin to grow.

Then some branches will grow, and eventually the leaves.

And over time with adequate water, rich soil with all of the necessary nutrients, and sunshine (compare to a sensory enriched life)…only then will you find a lush, green, strong and mature tree. This is the EXACT concept behind sensory integration. You wouldn’t just water a leaf on a tree would you and expect it to grow and thrive? You wouldn’t just sprinkle a branch with dirt to give it nutrition and expect for leaves to grow would you? Provide a sensory enriched life for your child, focusing on the power sensations, and watch your little tree grow.

The power sensations... your sensory foundation Vestibular, proprioceptive, and tactile input are called the “power sensations” due to the fact that they are the foundation for sensory integration and sensory processing skills. These three types of input provide the basis for brain development (besides the autonomic functions of the nervous system such as respirations and heart rate).

When you work on one area it impacts the processing of the other two in many ways. The complex processing of the brain and the pathways in which these three sensations integrate is the key to success!

Now here’s the thing…almost all children with sensory processing difficulties have difficulty processing information in at least one of these three areas, often all three.

The power sensations are the foundation and root of all development. Incorporating sensory activities from these three categories is essential for all children. And for those children who have sensory processing difficulties, it is critical. This may sound like a daunting task, but it doesn’t have to be! When you live a sensory life and set up your home as a sensory friendly environment, it becomes a part of your child’s day in a meaningful and purposeful way!

What is a sensory signal?

A sensory signal is a hint, clue, or indicator given by a child’s behaviour or reaction to the environment or surroundings. This includes a child’s reaction to social interaction or communication. When one understands a child’s sensory signals, it becomes more natural and clear as to how to enrich the environment with the right sensory tools and strategies.

Angie Voss – OTR

Angie Voss, OTR/L is a registered and licensed occupational therapist with over 20 years of experience working with children with sensory differences. Angie’s scope of practice includes extensive experience as a presenter of sensory workshops for parents as well as sensory training for various organisations and businesses including educators, therapists, physicians, and other medical professionals. Angie has published two books: Understanding Your Child’s Sensory Signals and Your Essential Guide to Understanding Sensory Processing Disorder; and has a third, Understanding Your Baby’s Sensory Signals, coming out soon.

Her website www.asensorylife.com is an incredible resource for anyone dealing with a child with sensory issues. It is packed full of information, fact sheets and ideas. You can also find Angie on Facebook – Understanding-Your-Childs-Sensory-Signals

If you would like to go into the running to WIN one of Angie’s books, please pop on over to www.sourcekids.com.au/competitions

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Getting stoked –

SURF’S UP!

Surfing has long been the domain of carefree coolsters, ‘at one’ with the water and the earth. Now, more so than ever, it’s a professional career option with prize money in the millions. But move over Kelly Slater and Stephanie Gilmore, there are some new dudes hitting the waves as Tasmanian children with a disability hang ten.

Special surfing classes for the disabled is not a new phenomenon, with the Disabled Surfers Association of Australia established in 1986.

The totally voluntary organisation has 15 branches across Australia and New Zealand, helping hundreds of people with a myriad of disabilities to feel the thrill of catching a wave.DSA National President and founder Gary Blaschke says the organisation has taken Australia’s iconic sport to the extreme.

“Ventilated quadriplegics are now experiencing this unique excitement of riding the waves whilst being looked after by up to thirty volunteers at any one time,’’ Gary explains.

“There is definitely something about being ‘at one’ with the ocean and riding waves that takes away plenty of life’s stresses and also makes for the most amazing memories.”

“Without our coaching experience and right equipment it would be hard for most to experience the thrill of surfing, but we keep it safe and fun and make it as easy as possible for all people to have access to surfing.”

“As an instructor it’s all about passing on my passion for surfing and for the ocean environment, so when I get to see others getting that ‘stoked’ feeling for the first time, it is such a great feeling to know they realise the pure enjoyment of it.’’

“We would love to do more lessons for special needs people as it gives us so much satisfaction to know that we have given a special experience that they will never forget.’’

“Catering for the full spectrum of disabilities is part of our inclusive program that no other sports can match.’’

New Horizons manager Belinda Hanson says sport in general has amazing positive outcomes for people with disabilities.

While there is no official branch in Tasmania, talks are underway to bring an event to the state every year. Until that happens, Coastrider Surf Academy is more than happy to help out.

“Through New Horizons Club we have seen many changes in confidence, self worth, health and wellbeing and members taking on responsibilities and gaining many skills that enhance their lives,’’ says Belinda.

Coastrider has been operating in Tasmania for 6 years, and has a Parks And Wildlife permit to operate at over 40 beaches statewide, with about 2500 surfers utilising the surf school on a yearly basis. While it has done some sessions in the past for children with Autism and Down Syndrome, this year it has embarked on a new program, that looks set to grow in the future.

More surf school classes are going to be organised for members, she informs.

New Horizons Club – a Tasmanian sport and recreation facility with 190 disabled athletes ranging in age from 7 to 60 – participated in a learn-to-surf program, with funding from Tasmanian Greens Senator Peter Whish-Wilson.

“I have been reading about very successful events run by surfing groups for autistic kids, with amazing results,’’ Senator Whish-Wilson explains.

“The focus and smiles it has brought to the kids is heartening. Surfing is one of the best things in my own life, and I want to share it with as many as possible.’’

Coastrider owner Jono Mereszka says the lesson at Bicheno’s Red Bill Beach in January was a rewarding experience for everyone involved.

“It’s all about having an experience that is fun and out of the ordinary,’’ Jono says.

“New Horizons Club is all about providing as many opportunities as possible for people with disabilities and an opportunity presented itself to introduce surfing and we jumped on it,’’ Belinda says. “It was a fantastic weekend.

Water is so therapeutic and the rush of our guys catching a wave was fantastic to see.’’

Gary admits that parents with disabled children are often apprehensive when first allowing their offspring to take part in DSA programs.

“Yet it only takes a few minutes before those tears of apprehension turn to tears of enjoyment for both the parents and some of the volunteers,’’ he explains.

“Parents often call or email me to tell me how surfing had changed not only their kid’s attitude to life, it had changed their family’s love for looking outside the square and not wrapping their kid up in cotton wool. Many kids never have the opportunity to be considered “normal”.

That is what we do.’’

And we all think that is just swell!

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JUNE 2014

National Disability Insurance Scheme

YOUR QUESTIONS ANSWERED What is it?

How is it progressing?

The Australian Government will provide $19.3 billion over seven years from 2012-13 to roll out the National Disability Insurance Scheme across the country. The Government is committed to a full national rollout in 2018-19. As a result, 460,000 people with significant and permanent disability will receive the support they need.

To date, the largest disability groups across the trial sites are autism, intellectual disability, Down Syndrome and cerebral palsy. Key findings in the report from the four trial sites in New South Wales, Victoria, South Australia and Tasmania include:

The NDIS works on an insurance principle, the idea being that anybody can be affected by disability. It will seek to minimise the cost of support and maximise opportunities over participants’ lifetimes, and invest in people through evidence-based early intervention.

How did it come about?

In 2011, the Productivity Commission called for an NDIS after conducting its largest inquiry ever. It compiled a 1400page report, labeling the existing disability support systems unfair, fragmented, underfunded and inefficient.

The report stated: ‘from an economic perspective, the benefits of the NDIS will exceed the costs’. An NDIS will support people with disability and their families to enter the workforce for the first time or return to work. It will also create tens of thousands of new local jobs, directly and indirectly.

Furthermore, it found the NDIS will ultimately add one per cent to the country’s gross domestic product – a significant boost to Australia’s economy. The case for an NDIS was clear and it received support from all sides of politics.

When was it launched?

The NDIS is one of Australia’s most significant social policy changes so it is being trialled in sites across the country. This allows the National Disability Insurance Agency (NDIA), which is responsible for implementing the scheme, to learn from experience and apply the lessons in the full-scheme rollout.

Trials began at four sites on July 1 last year: Tasmania (for young people aged 15-24), South Australia (for children aged 0-14), and in the Barwon area of Victoria and the Hunter area of New South Wales (for adults up to 65).

•

6,434 participants have been found eligible for the NDIS, with 5,414 having an approved plan by the end of March.

This is double the number at the end of December.

•

T he average package cost is now $34,000, down from $40,500 at the end of December, and below the funding expectation of $35,000.

• A round $107 million of support will flow to participants in 2013/14. This is well within the funding envelope of $152 million for 2013/2014.

From July 1 this year, the NDIS will commence throughout the ACT, the Barkly region of the Northern Territory and the Perth Hills area of Western Australia. Rollout of the full scheme across the rest of Australia will commence progressively from July, 2016.

Who is it aimed at?

The scheme covers people with significant and permanent disability that substantially reduces their ability to participate effectively in activities or perform day-to-day living tasks or actions.

It is important to note the NDIS is based on functional impairment, not diagnostic labels. This means if a child or adult has a severe and permanent disability, they will receive reasonable and necessary support – regardless of cause or type of disability or where or how a disability occurred; need determines support.

How does it work?

Children are known to benefit from early intervention so the extent of developmental delay would be looked at – this might include language, self-care and motor development.

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CASE STUDY

Four-year-old Ella Noble (left) with her sister Ava.

Once a person has been determined as able to access the scheme, an NDIS planner will listen to their goals and aspirations, and work with them to determine the most appropriate, reasonable and necessary supports that will help them achieve these goals. Plans are designed to enable participants to engage in education, employment and their community and become independent, to the best of their abilities, and receive necessary equipment.

If a person does not meet access requirements for an individual plan, NDIS planners and local area coordinators will help them find and connect to community supports, activities and organisations.

How is it funded?

The Government will increase the Medicare levy by half a percentage point from July 1, 2014. This will take the Medicare levy from 1.5% of taxable income to 2%.

For someone earning around $70,000 a year, this will equate to around 96 cents a day. Low income earners will continue to receive relief from the Medicare levy through the low income thresholds for singles, families, seniors and pensioners. The current exemptions from the Medicare levy will also remain in place, including for blind pensioners and sickness allowance recipients.

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Ella Noble

There are many stories from the trial sites about the benefits of the NDIS and the opportunity for an ordinary life for participants and their families. Four-year-old Ella Noble, of Adelaide, is just one of them.

She was born with spinal muscular atrophy, a genetic condition causing spinal cord nerves to deteriorate, weaken and eventually die. While Ella has one of the less-severe types of the disease, she requires the use of a wheelchair and cannot stand or walk for long periods.

Ella cannot pursue ballet classes like her older sister but she has interest — and talent — in art and craft.

Part of Ella’s individualised NDIS plan includes funding for Little Picassos, community art classes designed for youngsters. The class has been the key to building Ella’s confidence. Ella’s plan also includes in-home support and hydrotherapy. Her plan will be regularly reviewed and adjusted as she develops.

How do you access the NDIS and further information?

The ndis.gov.au website is the first port of call for information about the NDIS. It outlines when the scheme will roll out in each area and the My Access Checker allows prospective participants to check their ability to access the scheme. The website is continually updated with new information or you can sign up on-line for a newsletter.

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JUNE 2014

Your child has a diagnosis.

NOW WHAT?

Whether your child’s diagnosis comes prior to their birth, just after their birth or after a long battle to find what the issue is, it can come as a shock.

Often parents who have been searching and testing – seeing a multitude of professionals to get to the bottom of their concerns for their child, are so focussed on finding the diagnosis that they find the relief of having found the answer is quickly replaced by the devastating reality that there really is something ‘wrong’ with their beautiful child.

With that letter of diagnosis comes an entry way into a world you would never have expected to be a part of.

And there is no manual to guide you through.

One of the hugest parts of dealing with the diagnosis, for me, was accepting that the life I had mapped out in my head for Amy would not be happening. All those moments I had expected as my due while rubbing my bump and eating my body weight in (pasteurised) camembert, would be unlikely or impossible. I felt a real sense of loss for the person I had imagined my daughter would be and then guilt for feeling that way.

Social Worker, Zalia Powell BSW (Honours) explains: ‘There is a common assumption in our society that grief and loss is only experienced following the death of a loved one. However, a process of grieving is experienced when we journey through other significant and unexpected events in life such as divorce, breakdown of friendships and relationships, major illness and disability. For many parents,

the realisation that their child may not live the life they had envisioned is confronting and can trigger a grieving process for the child they expected to raise.

Grieving for your child with special needs does not suggest that you do not love and appreciate your child as they are; it is simply a natural and normal way of coping and adjusting to the unexpected. To grieve for the loss of a ‘normal’ life for yourself and your child, to grieve for opportunities you had hoped your child would have, to grieve for the way life used to be or to grieve for the sacrifices and for the compromises does not deny the love for your child as they are; instead it helps to make sense of your experience and move forward.

So, what does grieving feel like? Grieving is unique to each person; there is no right or wrong way to experience grief and no rules about when a person should ‘start’ or ‘stop’ grieving. Grieving does become easier over time as you reach acceptance of your situation. Common responses when grieving can include: Shock – feelings of numbness, disbelief or denial that the diagnosis is real or true; Sadness – deep sadness and despair, feelings of emptiness and loneliness; Guilt - feelings of guilt for your child’s disability – feeling that you should have done something different/prevented this from happening, feeling guilty about certain feelings or thoughts (e.g “why me?”, “I don’t want a child with special needs”); Anger - feelings of resentment or anger towards your child, anger toward yourself, doctors, your partner or other; Fear and worry - feelings of anxiousness, helplessness or insecurity; worry about the future and the responsibilities that you now have as a parent of a child with special needs;

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Physical symptoms – fatigue, nausea, weight loss/weight gain, aches and pains and trouble sleeping.

What can you do when grieving?

Be kind to yourself when you are grieving. Try to find time for ‘self-care’ (difficult to do as a parent, but key to managing long term!). Dedicate a set time to do something for yourself whether it be reading, journaling, going for a walk or meeting up with friends; activities that include physical exercise or relaxation are particularly helpful. Seek help and support from friends, family, other parents and community services and support programs. If you feel that your grief is significantly impacting on your ability to cope or is not resolving over time then reach out for support from your GP or services such as Lifeline or Beyond Blue; remembering that accepting help takes strength rather than shows weakness.

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CONTACT Beyond Blue on 1300 22 4636 or visit their website at www.beyondblue.org.au Lifeline on 13 11 14 – for 24 hour Telephone Crisis Support. Their website is www.lifeline.org.au For more support services available, please check the Source Kids Directory on pages 42 and 43 or view online at www.sourcekids.com.au

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WEBSITES AND BLOGS We

love right now www.asensorylife.com Angie Voss OTR/L with over 20 years experience packs this incredible resource with everything you could wish to know about sensory issues including: instructional videos; ideas on how to make your own sensory equipment; and handouts to print out and give to teachers/caregivers etc.

iraisemykids.wordpress.com Speech Pathologist and mum of two, Heidi Hosking details her daily trials and joys of mothering from the perspective of a speechie studying nutrition. Expect useful information (on how to choose a speechie for eg); delicious and healthy recipes and food ideas, and a range of topics covered from picky eaters to mindfulness.

www.snagglebox.com Australian Bec Oakley writes Snagglebox – a blog all about Austism that includes a collection of downloadable resources and parental support, with some very funny interludes (17 Things ‘The Princess Bride’ Taught Me About Parenting). Make yourself a cup of tea and sit back… there’s a lot of reading to be done.

www.friendshipcircle.org/blog This is an American blog, so not always completely relevant, BUT they cover a huge array of topics.

Worth a look!

www.raisingchildren.net.au One of Australia’s leading parenting websites, the Raising Children Network covers a huge range of topics giving parents help with day-to-day decisions of raising children and have a whole section on special needs with articles, videos, guide to disabilities and more resources.

JUNE 2014

Cacao Bliss Balls

Making sure that your family is eating a well balanced diet can be tricky sometimes, especially when you have allergies and/or intolerances to manage and children who love delicious treats a lot more than the healthier alternatives. Cue these Cacao Bliss Balls. I stumbled across the recipe a couple of weeks ago and feel the need to share the love. They are so good, and so good for you: little nutritional powerhouses that taste like a decadent dessert. They do contain nuts, so are no good for nut allergies, but they have no processed sugar, dairy, gluten, or grains. They are also really easy to make.

Ingredients: 1 cup pitted medjool dates (medjool dates are yummy, but if you’re on a budget, ordinary dates work really well too)

Recipe corner

½ cup shredded coconut 1 tablespoon chia seeds

What you do: Soak dates in warm water for 15 minutes to soften.

Whilst dates are soaking add nuts, cacao, shredded coconut, coconut oil and chia seeds to processor and mix.

Add dates and process.

If mixture is too dry add either a tablespoon of filtered water, or a little bit more coconut oil.

Let mixture sit for 10 minutes.

Roll mixture into bite size balls.

1 cup raw nuts (I like almonds and cashew nuts)

Roll balls in shredded coconut.

1/3 cup raw organic cacao powder

Pop balls into fridge and allow to cool.

1/3 cup coconut oil

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Alastair Kent CEO of RD UK, Megan Fookes, Executive Director of Rare Voices Australia and Rebecca Novacek, Assistant to Executive Director also of Rare Voices Australia.

RARE DISEASES DAY When you are the only one in the country, perhaps the world, suffering a rare disease variety, it is comforting to know that someone, somewhere, is on your side.

There was plenty of support around on the last day of February, when thousands of people from 84 countries took part in 410 events worldwide to celebrate World Rare Diseases Day.

From BBQ’s and cocktail parties to workshops and seminars, there was plenty of action on the day and Rare Voices Australia executive director Megan Fookes praised everyone’s efforts as outstanding. ``RVA are absolutely gobsmacked by all your efforts, which is truly heartening. Our united rare voices are now loud and clear and are being heard,’’ Megan says.

Added RVA director and Queensland geneticist David Coman: ``We had a great turn out. Together our unified voice is strong, loud, clear, and will gain momentum for better health care, treatment funding, research, and general advocacy for people living with rare disease.”

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The Steve Waugh Foundation has been involved with Rare Diseases Day in Australia over the past six years and was happy to help out again this year.

Foundation Chief Executive Paul Russell said the former Australian cricket captain was happy to help promote the day, given how hard it is for those with rare diseases to attain publicity in mainstream media by themselves.

“We are not disease specific. We will help anyone and everyone with a rarity of 2 in 100,000 for individual grants.

A lot of those are undiagnosed, a couple of those are, we think, the only ones suffering from their disease in Australia, and in some cases, the world,’’ Paul explains.

“They don’t have the support networks around them that sufferers of more common diseases have.’’

There are between 6000 and 8000 known rare diseases affecting Australians and around five new rare diseases are described in medical literature each week. A rare disease is classified as any disorder or condition that is life-threatening or a chronically debilitating disease which is statistically rare, with an estimated prevalence of five in 10,000.

Rare diseases affect one in 12 people across Australia – that equates to approximately 1.2 million people in Australia and 70 million people across the world. Eighty per cent of rare diseases have a genetic component and often they are chronic and life-threatening. Sadly, 30 per cent of rare disease patients die before their fifth birthday.

Rare Voices Australia is advocating as its number one priority for Australia to adopt a National Rare Diseases Plan.

Megan says that over the past two years, extensive research and information has been gathered through national coordinating committees, international meetings, engagement with those from across the rare disease sector and detailed reviews of literature.

This information was used to develop a scoping paper on the need for a National Rare Diseases Plan as requested by the Australian Health Ministers Advisory Council (AHMAC) in 2011. This paper included one recommendation – that Australia develops a National Rare Diseases Plan.

Kaitie Francis

AHMAC collectively did not support the development of a National Rare Diseases Plan but it requested more information on the status of genetic testing, disease coding and clinical pathways.

Western Australia and the Northern Territory have confirmed their written support for a National Plan for Rare Diseases and Megan says that throughout 2014, RVA will be engaging with the jurisdictions to gain further understanding on what is needed in order to give full support to a National Rare Diseases Plan.

Rare Voices Parliamentary Event, March 6 2014 at Parliament House, Canberra.

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What’s on? CALENDAR JUNE

JULY 13

Junk Free June – Give up or Take Up JUNK FREE JUNE is an annual fundraising event by The Junction Works. It helps people become healthier and supports young men and women with a disability to achieve their health and lifestyle goals.

1

The Balmoral Burn – Humpty Dumpty Race Day

Sydney Harbour 10k The Real Insurance Sydney Harbour 10k isn’t just about running fast. Get outside, get active, and go the extra mile by fundraising for an amazing charity. www.sydneyharbour10k.com.au

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Inaugural ASPECT Autism in Education Conference

In its 134th year, raising money to purchase medical equipment that treats and saves the lives of Aussie kids. www.humpty.com.au

The very first national conference specifically focusing on improving outcomes for children and young people in schools and further education. autismineducation.org.au

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19

Autism friendly performance of the Lion King

Touched by an Angel Charity Gala Dinner and Auction

www.autismawareness.com.au

The Ballroom Bankstown sports club – Touched by an angel gala dinner

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24-26

Brisbane Times City to South Queensland’s biggest fun run, now in its second year, promises to be one of 2014’s most exciting running events. www.city2south.com.au

29 Stay in Bed Day Australian Mitochondrial Disease Foundation – AMDF raising funds and awareness for Australian Mitochondrial Disease Foundation (AMDF) sufferers. www.stayinbedday.org.au

Townsville to Cairns Bike Ride Founded in 1999 by Selwyn Hardwick, who felt helpless when his sister passed away from cancer, and one of his grandchildren became ill with leukaemia. Sel came up with the idea of riding from Townsville to Cairns to raise money to give to the Children’s Cancer Institute Australia. tcbr.org.au

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Run Melbourne Taking in some of the city’s key attractions en route, this popular The Age Melbourne run event is quintessentially Melbourne! www.runmelbourne.com.au/home.php

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AUGUST 1

Jeans for Genes Day A national day when people wear their jeans to raise much-needed funds for research into birth defects and diseases such as cancer, epilepsy, and a range of genetic disorders. www.jeansforgenes.org.au

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Victorian Autism Conference Changing Landscapes. New Horizons – presented by Amaze, the Victorian Autism Conference brings together family members, carers, professionals, those on the autism spectrum, educators and practitioners, all with the common thread of ASD and a passion to improve their knowledge, skills and understanding. www.amaze.org.au/ events-info/vac

10

City2Surf Choose from a list of Australian charities to run and raise funds for. www.city2surf.com.au

14

Victorian Variety Bash Since 1992 the Victorian Variety Bash has covered a staggering 93,288 kilometres and raised over $18 million for children who are sick, disadvantaged or have special needs. Join us on this iconic Australian event in 2014 as we travel to Noosa. www.variety.org.au/VIC

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2014 XXXX GOLD ‘Cane toads to cockroaches’ Variety Bash Since those early days, the event has grown exponentially and these lovable larrikins have collectively raised over $17million for the sick, disadvantaged and special needs children of Queensland! www.variety.org.au/qld

13-25

Early Childhood Intervention Awareness Week To celebrate early childhood intervention awareness week, ECIA VIC, is holding ‘A Fair at the Farm’ at Collingwood Children’s Farm on Sunday 25th of August 2013. www.eciavic.org.au/advocacy/early-childhood-interventionawareness-week

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Variety NSW Bash 2014 The Variety Bash is Australia’s largest motoring event with participants travelling to rural parts of Australia that they would otherwise not see, at the same time raising money for disadvantaged and special needs children. www.variety.org.au/NSW/Events/Bash

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Novita’s Gala Dinner Celebrating Novita’s Diamond Jubilee: our 75th anniversary of caring for children with disability and special needs in South Australia – www.novita.org.au

24 –30

National Speech Pathology Week

Speech Pathology Australia

Speech Pathology Week is the annual week to raise awareness about communication and swallowing disorders, as well as the work of speech pathologists. www.speechpathologyaustralia.org.au

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Novita’s fifth annual Walk With Me A community walk, celebrating ability and social inclusion, will take place in August. www.novita.org.au

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DIRECTORY AIDS AND EQUIPMENT Abilitations PO Box 210, Forster NSW Phone (02) 6555 9877 www.abilitations.com.au debbie@lifeskills4kids.com.au or nicola@lifeskills4kids.com.au

Achievable Concepts 5 Collins Close, Caves Beach NSW Phone 0490 517 960 www.achieveableconcepts.com.au sales@achievableconcepts.com.au

DoAbility Kids 53 Stubbs Street, Kensington VIC Phone 1300 122 355 www.doabilitykids.com.au deb@doability.com.au

Korthotics 5/10 George Street, Leichhardt NSW Phone (02) 9569 3672 www.korthotics.com.au enquiries@korthotics.com.au

Medifab 26 Pardoe Street, East Devonport TAS Phone 1300 543 343 www.medifab.com.au solutions@medifab.com

Special Needs Solutions 12 Everest Drive, Southport QLD Phone (07) 5527 9794 www.specialneedssolutions.com.au info@specialneedssolutions.com.au

Springfree Trampoline PO Box 819, Buderim QLD Phone 1800 586 772 www.springfreetrampoline.com.au info@springfreetrampoline.com.au

CLOTHING AND ACCESSORIES Little Big Feet 6/2069 Moggill Road, Kenmore QLD Phone (07) 3378 5935 www.littlebigfeet.com.au info@littlebigfeet.com.au

Little Toggs 10 Selina Place, Glenwood NSW Phone 0426 972 914 www.littletoggs.com.au info@littletoggs.com.au

Wonsie Sydney NSW Phone 0409 309 129 www.wonsie.com.au info@wonsie.com.au

HEALTH & NUTRITION Bellamy’s Organic 52-54 Tamar Street, Launceston TAS Phone 1800 010 460 www.bellamysorganic.com.au info@bellamysorganic.com.au

Dr Salt 18/427 Hampton Street, Hampton VIC Phone (03) 9598 8805 www.drsalt.com.au reception@drsalt.com.au

SUPPORT SERVICES

Australian Leukodystrophy Support Group PO Box 2550, Mount Waverly VIC Phone 1800 141 400 www.alds.org.au mail@alds.org.au

Autism Awareness Australia PO Box 288, Seaforth NSW Phone (02) 9904 8700 www.autismawareness.com.au office@autismawareness.com.au

Autism Spectrum Australia (ASPECT) Phone 1800 277 328 www.autismspectrum.org.au

Beyond Blue PO Box 6100, Hawthorn West VIC Phone 1300 22 4636 www.beyondblue.org.au

Cerebral Palsy Education Centre – Victoria PO Box 211, Glen Waverley VIC Phone (03) 9560 0700 www.cpec.org.au info@cpec.org.au

Ability First Australia

CARA

Level 39, 259 George St, Sydney NSW Phone 1800 771 663 www.abilityfirstaustralia.org.au info@abilityfirstaustralia.org.au

98 Woodville Road, Woodville SA Phone (08) 8347 4588 www.cara.org.au help@cara.org.au

Angelman Syndrome Association Cerebral Palsy Australia PO Box 554, Sutherland NSW Phone (02) 85217463 www.angelmansyndrome.org president@angelmansyndrome.org

Association of Genetic Support Australasia

Level 39, 259 George St, Sydney NSW Phone (02) 8259 7725 www.cpaustralia.com.au contact@cerebralpalsyaustralia.com

CHARGE Syndrome

66 Albion Street, Surry Hills NSW Phone (02) 9211 1462 www.agsa-geneticsupport.org.au info@agsa-geneticsupport.org.au

PO Box 91, Glenfield NSW Phone (02) 9605 8475 www.chargesyndrome.org.au contact@chargesyndrome.org.au

Australian Kabuki Syndrome Association Inc

Cornelia De Lange Syndrome Association (Australiasia) Inc

13 Lockwood Road,Erindale SA www.kabukisyndromeassoc.com.au david.ellis@police.vic.gov.au

PO Box 20, Putney NSW Phone (02) 9809 0287 www.cdlsaus.org

JUNE 2014

43

The Junction Works

Scope Victoria

104 Yarralumla Drive, Langwarrin VIC Phone (03) 9775 9962 www.criduchat.asn.au

135 Thirteenth Avenue, Austral NSW Phone (02) 8777 0500 thejunctionworks.org info@thejunctionworks.org

830 Whitehorse Road, Box Hill VIC Phone (03) 9843 3000 www.scopevic.org.au crc@scopevic.org.au

Deaf Australia

Vision Australia

Speech Pathology Tasmania

PO Box 1083, Stafford QLD Phone (07) 3357 8277 www.deafau.org.au info@deafau.org.au

Phone 1300 84 74 66 info@visionaustralia.org www.visionaustralia.org

110 Elizabeth Street, Hobart TAS Phone (03) 6234 5717 www.spt.com.au speech@spt.com.au

Cri Du Chat Support Group of Australia

Deaf Children Australia Phone 1800 645 916 PO Box 6466, St Kilda Road Central, Melbourne VIC www.deafchildrenaustralia.org.au helpline@deafchildren.org.au

Down Syndrome Australia 219 Napier Street, Fitzroy VIC Phone 1300 658 873 www.downsyndrome.org.au info@downsyndrome.org.au

Williams Syndrome Association of SA 83A Ridgway Drive, Flagstaff Hill SA Phone (08) 7329 5409 www.wsasa.org.au wsaofsa@adam.com.au

65 Amy Road, Newstead TAS Phone (03) 6345 7333 www.stgiles.org.au society@stgiles.org.au

Young People in Nursing Homes National Alliance

TLC Psychology

207 City Road, Southbank VIC Phone 0437 178 078 www.ypinh.org.au

Lifeline PO Box 173, Deakin ACT Phone 13 11 14 www.lifeline.org.au

Prader-willi Syndrome Association (VIC) Phone 0451 797 284 www.pws.asn.au

Rare Voices Australia Suite 2, 3 The Postern, Castlecrag NSW Phone (02) 9967 5884 www.rarevoices.org.au admin@rarevoices.com.au

Rett Syndrome PO Box 855, West Perth WA Phone (08) 9489 7790 aussierett.org.au aussierett@ichr.uwa.edu.au

Spina Bifida Foundation Victoria Level 4, Ross House 247 Flinders Lane, Melbourne VIC Phone (03) 9663 0075 www.sbfv.org.au info@sbfv.org.au

The Fragile X Syndrome Suite 6, Level 3 39 East Esplanade, Manly NSW Phone 1300 394 636 www.fragilex.org.au support@fragilex.org.au

Services delivered Australia wide Phone 0410 788 844 www.tlcpsychology.com.au info@tlcpsychology.com.au

TOYS AND RESOURCES

THERAPY PROVIDERS

Foundation for Angelman Syndrome Therapeutics Australia PO Box 248, Salisbury QLD Phone 1300 078 108 www.cureangelman.org.au info@cureangelman.org.au

St Giles

AEIOU Central Office N70 Recreation Road, Nathan, QLD Phone 07 3320 7500 www.aeiou.org.au enrolments@aeiou.org.au

Cootharinga North Queensland 20 Keane St, Currajong QLD Phone (07) 4759 2000 www.cootharinga.org.au CSNQ@cootharinga.org.au

MontroseAccess Inc. 54 Consort St, Corinda QLD Phone (07) 3379 9200 www.montroseaccess.org.au information@montroseaccess.org.au

Northcott Disability Services 1 Fennell Street, North Parramatta NSW Phone (02) 9890 0100 www.northcott.com.au

Novita Children’s Services Days Road, Regency Park SA Phone (08) 8243 8243 www.novita.org.au enquiries@novita.org.au

Rocky Bay Inc. 60 McCabe Street, Mosman Park WA Phone (08) 9383 5111 www.rockybay.org.au admin@rockybay.org.au

My Diffability PO Box 302, Moonee Ponds VIC Phone (03) 8456 6613 www.mydiffability.com.au diffabilityaustralia@gmail.com

Life Skills 4 Kids PO Box 210, Forster NSW Phone (02) 6555 9877 www.lifeskills4kids.com.au debbie@lifeskills4kids.com.au or nicola@lifeskills4kids.com.au

SenseAbilities PO Box 445, Montrose VIC Phone (03) 9726 8047 www.senseabilities.com.au kathy@senseabilities.com.au

Special Needs 4 Special Needs 12 Stockridge Place, Morayfield QLD Phone (07) 5428 7126 www.specialneeds4specialneeds.com.au Fiona@specialneeds4specialneeds.com.au

Windmill Educational Toys & Equipment 256 Charles Street, Launceston TAS Phone 1800 333 634 www.windmill.net.au launceston@windmill.net.au

Zooba 34 Twin Peaks Road, Bli Bli QLD Phone 0410 620 240 www.zooba.net.au

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JUNE 2014

APPS

We

love

Apps Gone Free This FREE app, the 2012 Best App Ever Award Winner, designed for both iPhone and iPad, tells you which high quality paid apps are for free each day. Unlike other apps, there are no paid listings, so these are expert-picked topranked apps, for FREE! Every day hundreds of apps reduce their price to free for a limited time to try to stimulate excitement. AppsGoneFree finds ONLY the apps worth owning. It’s an honest to goodness human-curated list of the best free apps each day (about 5-10 each day).

• AppAdvice.com app experts personally handpick ONLY the best apps. If it’s on the list, it’s worth owning.

• These same experts write a quick summary to tell you about the app, and why you need it (or if you don’t). Not PR, honest personal advice.

• The junk is filtered out. Don’t waste your time looking at all the free apps generated by robots, scouring through them to find something worth downloading.

Whether you’re iPhone or Android there are over a million apps to choose from.

Here are three that we love right now.

Toca Doctor Let your kids be a doctor for a day!

Examine a patient and solve fun puzzles and mini-games that take place in the human body. Beautiful artwork and fun sounds guides your kids through 21 different puzzles! $2.99 hildren’s Technology Review C – Editor’s Choice “I really enjoyed this game. Treating the ailments was a great deal of fun, and the look of the game is gorgeous.

The activities use different tapping and dragging skills that are great for young kids, and older kids will just enjoy pretending to be doctors.” – Geekdad, Wired Magazine “Toca Doctor is an innovative app that introduces children to the medical profession and the human body while making it fun with creative minigames.” – The Gamer with Kids Let your kids be a doctor for a day! Examine a patient and solve fun puzzles and mini-games that take place in the human body.

Toca Doctor is a fun and puzzling digital toy for kids.

There are no timers or stress elements so that kids can play in their own time. If they can’t finish any certain game it still continues so that they never get stuck. It always works and it’s always fun!

Toca Boca

Proloquo2Go The symbol-supported communication app that gives a voice to people who cannot speak. AU$269.99 on the App Store.

Winner of a number of awards, including the Common Sense Media Learning Award 2014 and the 2011 Best App Ever Award, Proloquo2Go is the app you need to look at if your child requires an alternative communication device.

Proloquo2Go’s unique features make it the premier Augmentative and Alternative Communication solution for children, teenagers and adults who need symbol support.

Proloquo2Go has been used successfully with individuals with the following diagnoses: autism, cerebral palsy, Down syndrome, developmental disabilities, apraxia, stroke, traumatic brain injury and others.

Toca Boca is a game studio that makes digital toys for kids.

We think playing and having fun is the best way to learn about the world. Therefore we make digital toys and games that help stimulate the imagination, and that you can play together with your kids. Best of all – we do it in a safe way without thirdparty advertising or in-app purchases.

Book review

101 Games and Activities for Children with Autism, Asperger’s and Sensory Processing Disorders

The Reality Slap: how to find fulfilment when life hurts.

BY Tara Delaney

WEBSITE www.actmindfully.com.au

PUBLISHED BY McGraw-Hill

LEARNING THROUGH PLAY

Written by one of the world’s leading authorities on ACT (Acceptance and Commitment Therapy), who is also a parent of a child with special needs; The Reality Slap is a practical guide on how to deal with the pain of your ‘reality slap’ and not just to survive but to thrive.

One of the best ways for children with autism, Asperger’s, and sensory processing disorders to learn is through play.

Children improve their motor skills, language skills, and social skills by moving their bodies and interacting with their environment.

Yet the biggest challenges parents, teachers, and loved ones face with children on the autism spectrum or with sensory processing disorders is how to successfully engage them in play.

Using the proven principles of ACT, you’ll discover how to: find peace in the midst of your pain; find calm in the midst of your chaos; anchor yourself in the midst of emotional storms; increase your sense of connection with yourself and others; use your painful emotions to cultivate wisdom and compassion; find fulfilment even when you can’t get what you want; heal your wounds, and come through stronger than before.

WEBSITE taradelaney.com

Paediatric occupational therapist Tara Delaney provides the answer. In “101 Games and Activities for Children with Autism, Asperger’s, and Sensory Processing Disorders, she shows you how to teach your children by moving their bodies through play.” These interactive games are quick to learn but will provide hours of fun and learning for your child.

And many of the games can be played indoors or outdoors, so your child can enjoy them at home, outside, or on field trips.

BY Dr Russ Harris PUBLISHED BY Exisle Publishing

This is a book that has the power to change your life.

More than one hundred games that help your child: make eye-contact, stay focused, and strengthen his or her motor skills associate words with objects and improve language and numerical skills learn how to interact with others, how to take turns, and other social skills needed for attending preschool and school.

Go to www.sourcekids.com.au/competitions for a chance to WIN a copy of this fantastic book! In addition, the lovely people at McGraw-Hill would like to give Source Kids readers a 20% discount if they purchase the book from their site. Go to www.mcgrawhill. com.au/html/9780071623360.html and use the promo code AUTISM20. The promotion expires end of July.

Go to www.sourcekids.com.au/competitions to win one of two copies of Reality Slap.

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.