Source Kids Issue 2 September 2014 by Source Kids

Free

Issue 1 April 2014 Issue 2 â&#x20AC;&#x201C; September 2014

Tips for choosing

your therapist

reaching for Rio

our young superstars

Kabuki Syndrome Building Community

Kids go riding

st on e t a l e th

l a c i d e M uana marij

Get Social

connect online with us

Get all of the latest information and updates from Source Kids Download the latest Source Kids issue for free at issuu.com/sourcekids

SUBSCRIBE for FREE at sourcekids.com.au to receive all of the latest news, blogs and competitions direct to your inbox

September 2014

CONTENTS Features

6 Seizures 101 11 Doctor Dave 12 Choosing your therapist 20 Kids go riding 22 Lions Club funding 23 Give me 5 for kids 24 Building community 26 Sensory toys 2 8 Reaching for Rio 31 Source Kids launch 32 Medical cannabis update 33 Confidence boost 36 Kabuki Syndrome explained 38 10 Bright ideas to raise for your cause 42 Cerebral Palsy – the journey begins 43 Growing up with a disability

Regulars

2 Welcome 3 Products we love 4 Product review – strollers 34 Family profile – the Bozikov family 40 Websites, blogs and social sites we love 41 Recipe corner 44 What’s on calendar 46 Directory 48 Apps we love 49 Book reviews

September 2014

Welcome

The Team

to Source Kids

First of all, I need to shout out a massive thank you to the entire special needs community. We launched the first issue of Source Kids in June and the feedback and support has been overwhelming to say the least. We have received so many emails and calls of support and glowing feedback such as “it’s about time”, “this is such a well-needed resource”, “the content was so relevant to me”…and on it went.

Emma Price Publisher emma@sourcekids.com.au

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

Rachel Williams Editorial editor@sourcekids.com.au

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

I have been completely blown away by the response Source Kids has received over the last few months. Pulling together some statistics the other day, I discovered our total reach since we started the Source Kids journey in February this year, is 153,008!! That includes the printed and online magazine readership, Facebook and Twitter reach, eNewsletter reach and visitors to our website. Seeing that phenomenal number appear has given me so much reassurance that Source Kids is a worthwhile and needed magazine and online resource. This means that we have reached around 18 per cent of Australians under the age of 25 with a disability already, with just one issue! This realisation has encouraged the team to deliver yet another outstanding issue of Source Kids. We have some fantastic content including our Choosing your therapist feature, our young superstars that are headed to Rio, Kabuki Syndrome explained, Building Community, special needs stroller review, sensory toys, and the latest on Medical Cannabis, plus loads more. I hope you enjoy Issue 2 of Source Kids. Please remember to keep the feedback coming, along with suggestions of other information you would like us to cover in future issues. Thank you to each and every reader and supporter of Source Kids for helping us launch this much-needed resource. Until next time!

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 Contributors Rachel Williams, Marie-Louise Willis, Emma Price, Robyn Duregger, Heidi Hoskings, Mickaela Schelleman, Dace Johnson, Jen Kyriacou, Natalie Corrigan, Dr David Coman, Debbie Evans

Emma Price Publisher

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

s t c u d o Pr We

love

September 2014

We’ve had a number of companies approach us to buy space in this column, so we thought we should put it out there that ‘we love’ is genuinely filled with things that we love, use, think are cool and would recommend to our friends. While we are happy for companies to send their product in if they feel it fits the brief, ‘we love’ will only ever be filled with things ‘we love’.

Coles’ ‘trolley for children with special needs’ initiative What do you do when your child is too big (and heavy) to fit into the trolley seat but isn’t able to walk through the supermarket? Shop at Coles, of course. They have a trolley available that has an open front seat and can hold up to 70kg - so you don’t have to do your groceries one basket at a time. Coles has been a bit shy about coming forward with information on this initiative, so I recommend that you go and have a chat to your local store manager (which is what I did). They can order in a trolley for you, which they will keep out the back and if you ring them before you arrive they will meet you at the car with the trolley and will help you back to your car once you’ve finished your shop. Magic.

Miraflex glasses If you were wondering where our Issue 1 cover model got his super funky glasses from, now you know. Miraflex makes these fantastic, lightweight plastic, bendy glasses with no metal parts and hinge-free temples. That means that even with tumbles and scrapes, you always know that your child’s glasses aren’t going to damage their face. With incredibly resilient frames this flexible and safe eyewear option is crafted from a special plastic material that is light, malleable and comfortable to wear. They come in a number of different sizes, shapes and colours and with a band that keeps them on your child’s face. Miraflex is giving away three frames in your choice of size, colour and style. Pop on over to www.sourcekids.com.au/competitions to enter!

Monkey and Chops What is the only thing more laborious than organising a ‘to do’ chart and weekly schedule for your children? Having to make the jolly thing yourself. With paper cuts, the printer ink running out and the laminating machine making bubbles, it’s a nightmare. Luckily the good people at Monkey and Chops have taken the lengthy, tedious (and practically dangerous) task on themselves. They have whipped up a bright, colourful, magnetic daily planner and weekly schedule with magnetic tiles depicting all the possible activities and events (some blank ones are included in case you need to personalise them). Sturdy and well made, they definitely take the chore out of the task, look good hanging on the fridge and there’s not a laminating bubble in sight. Go to www.sourcekids.com.au/competitions to WIN one for yourself.

Calming Kids – Rainbow Parachute My daughter love, love, loves this – and who am I to argue? There aren’t a huge amount of things that she is motivated by, but this is one. It not only makes her happy but it also gets her ready to learn and try new things. Such a winner.

September 2014

Product review

We road test

strollers

We asked our friends at Medifab to help us road test four great strollers for children with special needs and we have come up with a pretty impressive list! The stroller you choose will vary depending on the needs of your child, how you will use the stroller and of course your budget. It is important when parents selecting a stroller for your child to think carefully about what your needs are and make sure you clearly communicate these to your OT or stroller specialist to find the best option to suit your needs. Here’s our top four:

Shuttle Discovery

Pixi Stroller

The urban chic, functional +1

The best all rounder

This functional stroller is not what you would usually think of when you are looking for a special needs stroller. With a four wheel option built on the Phil & Teds Verve and a three wheel model using the Steelcraft frame, this stroller will have you blending in with the crowds. Despite its ‘non medical appearance’ the Shuttle Discovery satisfies all of your child’s postural needs and can be converted to an indoor seat, rocker or high chair giving total flexibility of use. This is also the perfect option for parents who have another sibling with the extra seat that can be fitted as well as the full range of Phil & Teds accessories at affordable prices. A great option for the urban chic Mum and those with two small children.

Bingo Evolution Stroller

This robust and stable stroller is a best seller for children with mild to moderate positioning needs. A sophisticated and stylish option that is one of the few options that offers a step-up footplate to allow children to self-transfer without tipping the stroller over. This compact stroller has a compact frame, reclines for sleep or rest periods and is an easy and maneuverable stroller to push on various surfaces including grass and other offroad surfaces. With two sizes to choose from that cater for children up to 50kg, this trendy, lightweight stroller is great for children up to approximately 12 years of age.

Zip Folding Buggy

With all the mod-cons

Compact yet functional

The Bingo Stroller has undergone many improvements since it was first released in 2005. These improvements have created a multi-functional stroller that is also one of the lightest stroller options for special needs. With a full range of postural supports this stroller has a 45 degree tilt and can recline to almost 90 degrees providing flexibility for feeding, medication, sleeping and various postural supports. The removable foam cushions allow you to easily customise the seating position to your child and the latest Bingo model folds easily and into a small size to store in your car boot! This stroller offers great postural support and can be adapted to the needs of your child.

With a unique umbrella style compact fold, the Zip Buggy is super small to fit into your car boot and is also a great option for exploring the city or when travelling. The Zip Buggy is lightweight (12.5 - 13.5kg depending on stroller size), adjustable and can adapt to your growing child. The Zip holds a weight up to 50kg (size 1) or 60kg (size 2), and lives up to its name…it’s Zippy! With some of the largest wheels going round on strollers, the solid polyurethane flat-free tyres that come with the standard model (optional pneumatic tyres) provide a soft and smooth ride and is great on a range of surfaces. We love the Zip Buggy for quick easy city cruising or for those travelling.

September 2014

Shuttle Discovery

Bingo Evolution

Pixi Stroller

Zip Folding Buggy

Stroller weight

Frame – 12.5kg Seat – 7.5kg Combined – 20kg

Frame – 8.6kg Seat – 6.4kg Combined – 15kg

Size 1 – 12kg (total) Size 2 – 17kg (total)

Size 1 – 12.5kg (total) Size 2 – 13.5kg (total)

Total width

65cm

Size 1 – 63cm Size 2 – 68cm

Size 1 - 58cm Size 2 - 68cm

Size 1 – 59cm Size 2 – 63cm

Weight capacity

Frame – 55kg Main seat – 25kg Sibling seat – 15kg

Frame – 60kg Seat – 50kg

Size 1 – 35kg (total) Size 2 – 50kg (total)

Size 1 – 50kg Size 2 – 60kg

Size when folded

84 x 65 x 31cm

80 x 63 x 38cm

Size 1 – 73 x 59 x 40cm Size 2 – 85 x 66 x 41cm

Size 1 – 78 x 36 x 39cm Size 2 – 91 x 44 x 40cm

Brakes

Handle brake

Foot brake

Foot brake (one each wheel)

Wheels

3 or 4 wheel option

4 wheel

Colours

Callipso, mango, ocean, jet black, ink black (dartex wipe down)

Red, blue, yellow/green

Green/grey, ink black (dartex wipe down)

Grey only (with red fabric liner sold separately)

Material

Breathable fabric (also available in dartex wipe down fabric)

Breathable fabric

Breathable fabric (also available in dartex wipe down fabric)

Standard with reinforced nylon cover (optional padded upholstery covers available)

Anchor points (taxi/van fixing)

Yes

Suspension

Yes – front wheels

Price (typical package)

$5,000 (4 wheel) $4,500 (3 wheel)

$6,000

$3,000–4,000

$3000-4000

Thanks to Medifab for their assistance in road testing these strollers. All options are available for purchase at www.medifab.com.au

We only see the ability within. We are specialist yet small enough to respond to individual needs. St Giles has Tasmania’s largest team of dedicated paediatric physiotherapists, occupational therapists and speech pathologists.

We are modern and we are compassionate. Our centres in Hobart and Launceston are calm, light-filled and child-friendly spaces.

We are responsive yet sensitive. You can self-refer. We will work with you to help your child flourish.

We are national leaders. Our teams regularly present at National and International conferences.

We are Tasmanian. Since 1937 we have cared and expertly supported young Tasmanians to find the ability within.

We are peace of mind. We truly believe that everyone is able to live, work, play, laugh, love, learn, achieve and feel worthwhile if supported and nurtured to reach their fullest potential.

We are St Giles Children’s Therapy Service 65 Amy Road Launceston - 11A Gant Street, Lenah Valley

www.stgiles.org.au

September 2014

seizures

101 W

hen Emma and I were chatting about article ideas for issue 2, I put my hand up to write one about seizures. It’s something I knew very little about but because Amy’s genetic disorder usually comes along with a seizure disorder, I thought this was a good opportunity to do some research. I had also noticed that Amy had been staring absently a bit, but I wasn’t sure whether it was something worth following up or if she was just taking after her mother: queen of the daydreamers. Over the course of the following month, my research took on a much more practical dimension than I could ever have predicted; and five hospital admissions, two EEGs, one ambulance dash and a myriad of medications later, I can confirm that Miss Amy had not just been ‘perfecting the blank look’. Next issue I might see if I can research lottery winners. When we talk about seizures, we are referring to the physical findings or behaviours that occur after an episode of abnormal electrical activity in the brain. Often the term seizure is used interchangeably with convulsion, but convulsions (which occur

when the person’s muscles contract and relax repeatedly, causing the person’s body to shake rapidly and uncontrollably) are only evident in one particular type of seizure. When you take your child to emergency after having their first seizure, the doctors will attempt to find a reason for their seizure. They will run a lot of tests, which will probably include an EEG (Electroencephalography), an MRI (Magnetic Resonance Imaging) and/or a CT (Computed Tomography) scan, to try to find a cause of the Epilepsy. The EEG measures the amount of electrical activity within the brain and certain patterns can alert neurologists to the type of seizures your child may be having. The MRI of the brain can show if there is any scaring or abnormality. In some instances the cause of the seizure can be found and treated (like when a small child has a febrile convulsion due to a high temperature) but most seizures are idiopathic, which means that there is no known cause. Epilepsy is usually diagnosed when two or more seizures occur.

September 2014

Causes There are a number of different causes of epilepsy including head injury, an infection in the brain, trauma at birth and congenital abnormalities. Children with brain tumours may also develop epilepsy. If your child has a developmental delay, they are more likely to develop epilepsy. There are two main types of seizures: Generalised seizures, which involve the entire brain; and Partial seizures, which involve a specific part of the brain.

GENERALISED SEIZURES There are a number of different types of Generalised seizures. They include: Absence seizures (also known as Petit Mal seizures). People experiencing Absence seizures typically appear to stare without moving. Usually lasting less than 15 seconds, Absence seizures can occur many times a day and may be mistaken for daydreaming. While your child may not remember what happened during the seizure, they’ll typically return to being instantly alert as soon as the seizure is finished. Atonic seizures (also known as Drop seizures). Atonic seizures cause the muscles to go limp. Your child’s body may slump or drop to the ground, possibly causing injury. Myoclonic seizures – Unlike atonic seizures, myoclonic seizures (myo meaning “muscle”, clonic meaning “jerk”) result in an increase in muscle tone. The areas of the brain stem responsible for increasing and decreasing muscle tone are close together – meaning Atonic and Myoclonic seizures probably begin in the same place. If your child is experiencing sudden dramatic changes in muscle tone, they will often suffer from either or both types of seizures. If they are having a Myoclonic seizure, they would typically react as if hit by a single jolt of electricity. Tonic seizures – During a Tonic seizure, muscles initially stiffen and the person loses consciousness. Their eyes roll back into their head as the muscles (including those in the chest, arms and legs) contract and the back arches. As the chest muscles tighten, it becomes harder to breathe – the lips and face may take on a bluish hue, and they may begin to make gargling noises. Clonic seizures – During a Clonic seizure, your child’s muscles begin to spasm and jerk. The elbows, legs and head will flex, and then relax rapidly at first but the frequency of the spasms will gradually subside until they cease altogether. As the jerking stops, it is common to let out a deep sigh, after which normal breathing resumes. Tonic-clonic seizures (also known as Grand Mal seizures). A Tonic seizure is typically accompanied by a Clonic seizure – it is rare to experience one without the other. When both are experienced at the same time, this is known as a Tonicclonic seizure.

PARTIAL SEIZURES There are two types of partial seizures: Simple and Complex. Simple Partial seizures are localised to one area on one side of the brain, but may spread from there. Consciousness is not lost during a Simple Partial seizure. Physicians typically break Simple Partial seizures down into four areas, depending on the location in the brain and parts of the body affected: Motor – A Simple Partial seizure with motor symptoms will affect muscle activity, causing jerking movements of the foot, face, arm, or another part of the body. Physicians can diagnose which side of the brain is affected by observing which side of the body experiences symptoms (left brain controls right side, right brain controls left side).

What to Do It is important for parents and guardians to know how to react when a child is having a seizure. It can be difficult, a little confronting and there may be a feeling of helplessness experienced. It is necessary to know what you should and shouldn’t do during an actual episode: • Ensure that you are in a safe spot, gently place your child on the floor or ground and remove any nearby objects. • Loosen any clothing around the head or neck. • Ensure their airway is unrestricted and that they are breathing. • Roll your child onto their side in the recovery position to prevent choking. • Time the seizure, if possible. • Do not try to prevent your child from shaking — this will not stop the seizure and may make your child more uncomfortable. • Do not put anything in your child’s mouth. Your child will not swallow his or her tongue, and forcing teeth apart could cause injuries. • Do not give your child anything to drink. • Let your child sleep after the seizure. • Call your child’s doctor. Remember to get an individual care plan from your doctor to give to your child’s school and anyone else who will be caring for them in your absence. The individual care plan will list how to react when a seizure occurs.

Call an ambulance 000 • If the seizure lasts more than 5 minutes or a second seizure quickly follows. • If your child remains non-responsive for more than 5 minutes after the seizure stops. • If your child is having more seizures than is usual for them. • If your child is injured, goes blue in the face or has swallowed water. • If your child has a known heart condition. • If it’s your child’s first seizure. • If you feel uncomfortable dealing with the seizure.

September 2014

Finn Murdoch 5 years old

Case study

Diagnosis: Autism, global developmental delay, Epilepsy. Type of Seizures: Atonic, Absence. Medication: We have tried Epilim, Lamictin and Keppra with varying degrees of success. He has been on Tegretol for 18 months and hasn’t had an Atonic seizure in that time. Diet: Gluten and largely sugar free. Triggers: Sensory overload, gluten, sugar, knocking his head, Getting sick.

Post-Ictal: After most Generalised seizures end, your child will be completely unresponsive. Gradually they will emerge, taking anywhere from minutes to hours to recover fully.

Status Seizures Status seizures, also known as Status Epilepticus, is a serious medical emergency. There are two definitions of Status seizures: • A prolonged seizure, usually lasting more than 10 minutes. Sensory – A Simple Partial seizure with sensory symptoms affect the senses: hearing problems, possible hallucinations, and other distortions. Autonomic – A Simple Partial seizure with autonomic symptoms affects the part of the brain responsible for involuntary functions: it may cause changes in blood pressure, heart rhythm, bowel function, etc. sychic – A Simple Partial seizure with psychic P symptoms affects parts of the brain that trigger emotions or previous experiences: it may cause feelings of fear, anxiety, déjà vu (the feeling that something has been experienced before), etc. Complex Partial seizures can begin in any lobe of the brain, but cause alteration of awareness due to spreading of seizure activity. Complex Partial seizures are often preceded by a Simple Partial seizure (aura). An aura is often described as a warning and can manifest in several different ways, such as a sense of fear, a funny feeling in the body, déjà vu, etc. If your child is experiencing a Complex Partial seizure they may stare blankly into space, or experience automatisms (non-purposeful, repetitive movements).

• Having more than one seizure without fully recovering from the Post-Ictal state in between. So, if your child has a seizure and is still unconscious or groggy when they begin to have another one, they are having Status seizures. Status is uncommon and the treatment of epilepsy aims to prevent status from occurring and, if it occurs, to treat it rapidly. Some patients who are considered at higher risk of Status may be prescribed emergency medication, such as intranasal Midazolam, for out of hospital use. These medications should be kept in an appropriate safe place, the use by dates should be checked regularly, and training should be provided to anyone who might be required to administer the medications.

Epilepsy Syndromes An Epilepsy syndrome is diagnosed on the basis of the type or types of seizure your child is having, the patterns on the EEG and from other prognostic information. Having a diagnosed Epilepsy syndrome can help to better define therapy, predict the potential outcomes (whether someone will outgrow the Epilepsy for example) and work out the optimal form of treatment.

There are three stages that make up a seizure:

Epilepsy and the Developmentally Disabled

Ictal: This is the seizure. In most Generalised seizures your child will be completely unresponsive.

Children with an intellectual impairment, Cerebral Palsy or a genetic disorder are more likely to develop Epilepsy. Approximately 30% of children who have Epilepsy also have a developmental disability. Some genetic development disorders have a very high chance of developing seizures including Rett Syndrome and Angelman Syndrome.

Pre-Ictal (which is the aura or warning stage): people who have a history of seizures may be able to predict that a seizure is coming on. This is the stage that seizure dogs can pick up, so they can alert their carer/parent/family member.

September 2014

Treatments There is no one treatment that works for all seizure patients and each treatment plan is tailored to the individual. These are the main types of treatment for seizure disorders.

disconnection. It interrupts the nerve pathways that allow seizures to spread. This is useful when the area where the seizures begin is too important to remove. It is generally thought of as providing relief rather than a cure.

Diet

Medication Anti-epileptic drugs (AEDs) are usually the first-line treatment for people suffering from seizures. AEDs do not work by curing the Epilepsy but rather work on supressing the seizures. There is a seven out of 10 success rate but medication has to be taken correctly to reduce the risk of breakthrough seizures. There are a lot of different types of AEDs on the market and your doctor will determine which one/s to prescribe for your child depending on the types of seizures they are having, the risks of side effects, the ease of use and the cost. While these medications can be used in conjunction with others, it is preferable to use as few as possible to reduce the chance of side effects. Working out the right medication for each person can be complicated as certain medications work better for certain types of seizures, and not all medications work well when taken together. The ideal result is to have no seizures and no side effects.

Devices The vagal nerve stimulator is a device that is implanted into the child’s neck and shoulder area, in the operating room. The generator (in the shoulder) sends a preset electrical impulse to the vagal nerve (in the neck), which in turn stimulates the brain. This device is used to control seizures in conjunction with anti-epileptic medication.

Surgery For people who have tried a combination of two or more medications without success/relief from their seizures, surgery is a viable option. In the past, surgery was viewed as a last chance solution, often after years of uncontrolled seizures while being treated with medication. In 2001 a definitive study was published in the New England Journal of Medicine that showed the benefits of surgery over long-term unsuccessful medicating. Surgery can successfully bring about an end to the patient’s Epilepsy altogether. It can also have no effect. Generally, though, the result is somewhere between the two. There are two types of surgery: The first, resective surgery, is when the part of the brain where the seizures begin is removed. The most common is the temporal lobectomy. The goal of resective surgery is cure of the seizure disorder. A second, less common surgery is referred to as

• flat feet • hypermobility • toe walking • delayed gross Brisbane’s only exclusively child focused Podiatry Clinic and Shoe Shop motor skills • tripping & falling • intoeing • gait assessment and much more

Feet: www.littlebigfeet.com.au Shoes: www.littlebigshoes.com.au

Ph 3378 5935 – 6/2069 Moggill Rd, Kenmore (Parking in Princeton St)

When daily seizures occur after a number of medications have been trialled, there are a few diets your child’s doctor may recommend: Ketogenic, the modified Atkins diet or the Low Glycemic Index Treatment (LGIT).

Ketogenic Diet This is a very restrictive diet but several studies have shown it does prevent or reduce seizures in people whose seizures couldn’t be controlled with medication alone. The diet works on the principle that if you remove carbohydrates from the diet, the body cannot use them for fuel and so it uses fat instead. This is what produces the ketones in the body. Higher ketone levels often lead to improved seizure control.

Modified Atkins Some families who had been following the Ketogenic Diet for many years, gradually stopped weighing and measuring foods and found that, in spite of this, ketones remained high and seizures stayed under control. Dr Eric Kossoff and his colleagues at the Johns Hopkins Hospital first studied this in 2002, with continuing research and larger studies taking place since then. What they have found is that the modified Atkins Diet seems to help about the same number of people as the Ketogenic Diet (50% with greater than 50% seizure reduction, including 15% seizure free). It is still a restricted diet, so families still need some support but it doesn’t require a fast or a hospital admission to begin and it is easier to fit in to every day life. It is a ‘modified’ Atkins Diet because it allows for fewer carbohydrates than the traditional Atkins Diet.

Low Glycemic Index Treatment The LGIT is a new dietary therapy being trialled to treat Epilepsy. The LGIT is attempting to replicate the positive effects of the Ketogeic Diet while allowing a more generous intake of carbohydrates. The LGIT Diet is also known as the South Beach Diet and is similar to the Modified Atkins except it encourages the use of unsaturated fat and it allows a more generous allowance of low GI carbohydrates. NOTE: You need to consult a dietician and your neurologist before deciding to begin these, or any other diet, with your child.

Miraflex frames for babies, toddlers and all sports activities feature non-metal parts and hinge free construction to reduce the risk of facial and eye trauma.

PH (02) 8007 6041

Visit us on Facebook

September 2014

Case study

Lucah Dunn 12 years old Diagnosis: Down Syndrome, hearing impairment, Epilepsy, remission from AML. Type of Seizures: Absence, Myoclonic. Medication: Keppra. Diet: Predominantly processed and sugar free. Triggers: Being unusually active, humidity and eating highly processed or sugary foods. Lucah loves to ride his recumbent bike, which is much safer for him, lower to the ground, very stable, and in a seated position. If he has a seizure whilst riding he isn’t going to fall.

Medical Marijuana

References

This is a hot topic that we covered in both the first issue of Source Kids, and in this issue, as new developments have occurred. There are not enough case-controlled studies to be able to say for certain what the benefits of this therapeutic are for people with Epilepsy but there is plenty of anecdotal evidence that people with seizures that can’t be managed with other AEDs, have had great success with medical marijuana. The Age reported on the 23 July that in a ReachTel survey of more 3400 Australians, almost two thirds supported the legalisation of medical marijuana. Watch this space.

• www.hopkinsmedicine.org • www.epilepsy.com • www.epilepsy.australia.net • www.epilepsyqueensland.com.au • www.epilepsy.med.nyu.edu • www.kidshealth.org • www.efmny.org Children With Seizures – A Guide For Parents, Teachers, And Other Professionals (JKP Essentials) by Martin L. Kutscher MD (Mar 15, 2006).

This article only briefly begins to explain seizure types and treatments. Please go to the websites listed or read Martin Kutchers book Children with Seizures for more detailed information. Please also discuss any concerns you have with your child’s doctor and neurologist, and don’t embark on any treatment plan without their knowledge and consent.

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

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

September 2014

Doctor

Dave

To his young patients in Brisbane, paediatrician, metabolic physician and clinical geneticist Associate Professor David Coman is ‘Dr Dave’ or ‘Dr Batman’ thanks to his comic caped crusader watch. Words | Dr David Coman

hose friendly monikers have also followed The Wesley Hospital’s Medical Director of Paediatrics to the Solomon Islands, where he has begun regular six-monthly visits to volunteer his time and expertise to the Helena Goldie Hospital and College of Nursing. The hospital and college in Munda, on the island of New Georgia in the Western Province, are supported by UnitingCare Health and its partner UnitingWorld through provision of muchneeded medical equipment, supplies, sponsorship of nursing students and teaching. On his recent four-day trip in July, Dr Coman held two days of paediatric outpatient clinics, consulted on hospital ward rounds, and with The Wesley Hospital’s Maternity Clinical Educator Jo Hardcastle conducted demonstrations on neonatal resuscitation techniques. He also did training on rehydration via nasogastric tube for children suffering vomiting and diarrhoea. “Following the floods in the country in April, there was a widespread outbreak of gastroenteritis and sadly several children died,” he said. “It’s a stark reminder of the differences between accessibility to medical care in a firstworld country like Australia and in a developing nation like the

Solomon Islands, where the majority of people are poor and live in remote communities a long way away from healthcare facilities. It is unheard of in a first-world country for a child to die from gastroenteritis.” Dr Coman said while it was confronting and challenging working with limited medical facilities and resources, he returned from his latest trip, his second to Munda, feeling he had made a difference. “When I first went in December last year I saw a Down Syndrome child in heart failure because he had a hole in the heart. I was able to do some teaching with the hospital staff to recognise the symptoms of heart failure. “On my most recent visit, one of the first patients I saw during ward rounds was a six-week-old baby boy with signs heart failure. The doctors had recognised it and begun some treatments before I arrived. That was really positive. It was reinforcement that teaching is important and can have a profound effect.” Part of Dr Coman’s recent trip was also devoted to laying groundwork for a future paediatric tour to other islands and villages in the Western Province, such as Gizo and Seghe, and discussions with local authorities on a pneumococcal vaccination program. “There is a very strong vaccination program at the hospital in Munda, but children don’t receive the pneumococcal vaccine, which is part of the routine immunisation schedule in Australia and which prevents specific bacterial pneumonia and respiratory infections. “Vaccination is expensive, so we are investigating ways to assist, and to do nasal swabs to identify the bacteria’s prevalence and carrier rates, and track the effect that a vaccine program would have on improving children’s health.”

Choosing your therapist

Complementary & Alternative Medicine

Complementary and Alternative Medicine (CAM) has never been more popular. Covering a huge range of practices and therapies, CAMs tend to offer a more holistic approach to health care, with the aim of treating the person not just the symptoms. There are so many types available from acupuncture to yoga and everything in between. Some are backed by glowing testimonials, while others do have scientific research and have even begun to be included in mainstream medicine. The problem is that because they are not properly regulated, it can be tricky to know whether you’ve stumbled across a miracle cure or the latest snake oil. Parents of children who aren’t diagnosed or who are not responding to mainstream options are particularly vunerable. Certain therapies such as acupuncture, chiropractic and osteopathy have become so commonly used that they have almost crossed over into mainstream (and your health fund may even pay for them). Others, such as aromatherapy, reiki and homeopathy have less scientific research to support their claims but are very popular none-the-less. So, how do you choose the CAM that’s right for your child?

Research Decide on what your medical goals are. Then decide on what type of CAM you would like to try. They can be broadly separated into four groups: • Natural products, herbs and nutritional products (like probiotics); • Hands-on therapies (like Bowen); • Mind-body therapies (like yoga); and • Energy-based therapies (like kinesiology).

Consult with your GP Some are more than happy to include CAMs as part of your child’s treatment program. They may have a practitioner that they know of or recommend and at the very least can advise you on whether it is safe to use other complimentary medications with the ones your child is already taking.

Contact Professional Associations They may be able to provide you with a list of complimentary therapists in your area.

Compare Choose a couple of practitioners and compare: what kind of training have they had; how much they cost; how long they expect to take to treat your child and the results they would be expecting to see. If they are legitimate, they will have no problems answering your questions.

Isn’t it regulated? CAMs are a huge industry and cover an enormous range of practices and medication. Under Australian law every complimentary medicine has to be assessed for the safety and quality of its ingredients but not for whether it works or not. Always buy Australian-made complimentary medicines that are labelled ‘Registered Aust R’ or Listed Aust R’. Complementary therapists are regulated by state governments, so the laws are different in each state. The industry is largely self-regulated so it is not a legal obligation for therapists to register with their professional association.

Creating happy confident kids, by increasing self confidence, and reducing anxiety, behavioural and sleeping problems. Give your child a positive, well balanced foundation that will help them thrive in any situation and give them the confidence to learn and grow.

Cosmos Child is an energetic healing modality and complete philosophy on Childhood Wellbeing, assisting children and parents understand the cause of symptoms and challenges. Cosmos Child was designed to assist children live in balance and feel whole. We offer in-home private consultations.

• PO Box 611 Riverstone NSW • T: 0403 822 255 • E: tina@colourkids.com.au • W: www.colourkids.com.au

• In-home private consultations • T: 0406 602 449 • E: nicolaross21@googlemail.com • W: www.cosmoschild.com

S pecial feature

September 2014

Combined Therapies

There are a number of therapy centres around Australia that offer multiple therapies under the one roof. These businesses may offer a combination or all of the following therapy types: physiotherapy, occupational therapy, speech therapy, psychology, and alternative therapies. These businesses are a one-stop-shop for parents of children with special needs. This often allows for therapies to be integrated and multiple therapists can attend appointments to develop a more holistic approach for your child’s therapy program. It also allows services to be delivered in the one location, meaning less travel and appointments can be coordinated more easily. When choosing your therapy team, the same considerations apply as when selecting individual therapists. Make sure you do your research, and find out the following: • Check what each therapist’s qualifications are

• Are they associated with a recognised association? • Find out how much experience they have, and if they are experienced treating similar cases to your child’s • Ask for referrals from friends, family, school and your medical team • Do a search, the Internet may help you find out more information through their website, customer reviews, Facebook pages etc. • Call the business and find out what their availability is like and what the costs would be • Make an appointment and get a feel for the type of service they can offer your child While combined therapy providers are a great idea for some, remember it is still up to you to choose the therapy team that is best for your child.

A specialist therapy centre supporting children, adolescents and their parents with a range of professional assessment, psychological, counselling and therapy services. All About Kids therapists specialise in assessment and intervention for Autistic Spectrum Disorders and other developmental disorders. Approved provider for HCWA and Better Start packages.

KidsRISE takes a developmental, play-based approach, guided by DIR®/ Floortime™, providing Speech/Occupational Therapy for children with complex needs. Therapy involves parent-child interactions, tailored to the child’s individual profile, with therapists assisting parents to provide ‘just right’ challenges, facilitating developmental growth.

• Shop 2/33 Lisson Grove, Wooloowin QLD and Suite 4/286-288 West St, Umina Beach NSW • T: QLD (07) 3262 6009 • NSW (02) 4339 7314 • E: info@allaboutkids.com.au • W: www.allaboutkids.com.au

• Level 1/490 High Street, Northcote VIC • M: 0414 322 568 M: 0419 133 895 • E: cara@kidsrise.com.au or miranda@kidsrise.com.au • W: www.kidsrise.com.au

Everyday Independence supports children of all ages and abilities through Occupational Therapy, Physiotherapy & Speech Pathology services. Specialising in working with children and their families, supporting them to live an everyday life. We provide in room and community based services from locations throughout Victoria.

Wattletree Centre brings together the most sought after clinicians and services for your child. Our qualified professionals establish which therapies will most benefit your child, continually monitoring their progress and development. We provide a fun, enthusiastic and supportive environment to help your child learn, develop and grow.

• Ground Floor, 19-21 Argyle Place South, Carlton VIC • T: 1300 179 131 • E: info@everydayind.com.au • W: www.everydayind.com.au

• 99 Wattletree Road Armadale VIC • T: (03) 9500 2844 • E: contact@wattletreecentre.com.au • W: www.wattletreecentre.com.au

Choosing your therapist

Explaining

Occupational Therapy Words | Robyn Duregger

Does my child need an OT? For a child, ‘occupation’ is learning and playing, and activities of daily living such as eating, dressing and developing independence in toileting. If there are concerns regarding how your child is developing in any of these areas, phone a Paediatric OT – ask!

How do I choose the best OT for my child? There are a few key steps to finding the right therapist for your child. Start by asking around – ask your school or kindy if they can recommend someone. Ask your child’s GP or Paediatrician – who do they refer children to? From there, you may have a few names, or you may find there’s one name that keeps popping up. Make the first phone call – is the therapist interested? Is he or she someone you can comfortably talk to at that very first point of call? Can they outline how long you’ll have to wait for an appointment and how much both an initial assessment and regular sessions will cost? Don’t be afraid to ask how long they have been working with children, their experience. Ask if they would be willing to visit your child at home, at school or childcare if necessary. The relationship you and your child have with your therapist is the key. If you feel you’ve chosen the right person before you’ve even met, that’s a great start!

What can you expect at an OT appointment? Expect to be asked about your goals for your child – what’s at the top of your list, when it comes to what you would like your child to achieve? You should know what purpose of the session is – why specific activities have been chosen. Expect your child to have fun! Children perform the best and are happy to take chances and challenge themselves, when they’re having fun, and feel supported. This usually includes lots of opportunities to move – movement and physical challenges are necessary for muscle growth and to maintain a child’s attention. Expect to stay in the session, learn, ask questions, and come away from the session feeling positive, with practical ideas of activities to practice at home, and having understood why. Robyn Duregger is a Paediatric Occupational Therapist and Clinical Director of North Coast Therapy – a private occupational therapy provider located on the Sunshine Coast Qld. 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

In sync kids OCCUPATIONAL THERAPY

Happy Dots is a privately owned Occupational Therapy clinic located in Toronto, NSW offering a friendly, professional and sensory based approach for children of varying conditions including Autism Spectrum Disorders. We offer Individual therapy, group programs, home and school visits across the hunter region!

In Sync Kids Occupational Therapy practice specialises in Sensory integration and Neurodevelopment. Our aim is to make every child successful at being a kid by nurturing their foundational sensory processing, postural skills and social skills, cultivating happy and successful kids at school and home.

• 5/58 Victory Parade, Toronto NSW • T: (02) 4959 8920 • E: admin@happydots.com.au • W: www.happydots.com.au

• Body Organics, 6 Ambleside Street, West End QLD • T: 0481 121 844 • E: carlyn.cooper@insynckidsot.com • W: www.insynckidsot.com

S pecial feature

September 2014

Our team of eight experienced Occupational Therapists, one Psychologist and one Speech Pathologist are passionate about early intervention, building foundations of development and helping children succeed. We work with all sensory, learning, motor and development needs. See our website for more information.

Kids OT is a long established Pediatric Occupational Therapy service focusing on family-centered assessment and intervention for children 0-18 years, to overcome learning, sensory and developmental issues. Offering individual OT sessions, specialised, group and social skills programs, psychology and clinical dietitian services.

• Clinics at Yeerongpilly and Albany Creek QLD • T: 1300 136 596 • E: admin@kidsmatters.com.au • W: www.kidsmatters.com.au

• Suite 13 Level 1, Forestway shopping Centre, Frenchs Forest NSW • T: (02) 9451 5735 • E: admin@kidsot.com.au • W: www.kidsot.com.au

M.O.T.A. (Melbourne Occupational Therapy Associates), one of the oldest and most successful private Occupational Therapy practices in Victoria. M.O.T.A. provides Occupational Therapy services for children from birth to 18 years of age and to adults with sensory processing, neurological and developmental disorders.

Maximise your child’s ability to live, learn and play. We can help children with: toilet training; eating and dressing; fine motor skill and handwriting; learning, attention and behaviour. We support children with mild and complex needs. We can travel to you and offer rebates through Medicare, private health and FahCSIA.

• 603-605 Nicholson Street, Carlton North VIC • T: (03) 9387 1734 • E: info@melbourneot.com • W: www.melbourneot.com

• Suite 6, Level 1, 9 Brookfield Road Kenmore QLD • T: (07) 3378 9543 • E: admin@occtherapy.com.au • W: www.occtherapy.com.au

Occupational Therapy clinic providing client centred, goal directed therapy for children and adolescents. Aiming to enhance active participation in every person’s life with a special interest in helping children with cerebral palsy and acquired brain injury. Providers for Better Start funding.

• 11/116 Wellington Street, Ormiston QLD • T: (07) 3821 3399 • E: admin@optimummovement.com • W: optimummovement.com

Splash OT provides best practice, comprehensive services for children with additional needs. In partnership with parents and teachers, our intervention enables the child to fully participate in their everyday life occupations of play, self-care and productivity (preschool and school).

• Wyndham Private Medical Centre, Level 1 – Allied Health Wing 242 Hoppers Lane, Werribee VIC • T: (03) 8731 6555 • E: info@splashtherapy.com.au • W: splashtherapy.com.au

• Occupational therapy for children • Multi-disciplinary practice • Autism, developmental delay, learning difficulties, sensory processing differences, physical disability

• 1/ 14 Clare-Mace Cr, Berkeley Vale NSW • T: (02) 4389 1812 • E: admin@senseability.com.au • W: www.senseability.com.au

Sprout specialises in supporting children with special needs to maximise their physical, social, emotional and learning potential. We aim to make meaningful connections with children, and their families to enable the child to achieve their goals by providing quality, innovative therapy services.

• 352 Main street, Mornington VIC • T: (03) 5975 9197 • E: sprout@sprouttherapyservices.com.au • W: sprouttherapyservices.com.au

Choosing your therapist

WORDS | Dace Johnson

o you have decided your child needs the assistance of a physio. That’s great! How do you go about finding a physiotherapist that suits your needs? There are a number of options:

• You could talk to your child’s GP/Paediatrician • Or talk to other parents or teachers at school/childcare/ kindy/ sport and find out if they have seen anyone whom they would recommend – word of mouth is always the best referral! • Do a search on the internet Do one or two names keep coming up? If that name or service comes up repeatedly, check what sort of conditions that physiotherapist treats. Some physios mainly treat sporting injuries. Others may focus on Cerebral Palsy or respiratory conditions. Others may be great with feet and knees! In general paediatric physiotherapists are able to care for all of these conditions or refer you to the best person they know. Physiotherapists working with children/young people can be accessed through the public hospital system, community health centres or privately. First impressions count. When you phone to enquire, the person on the other end of the phone needs to be approachable, friendly, helpful and knowledgeable. The physiotherapist needs to be flexible with their availability. Do they do hospital, home, school or childcare visits as well as seeing children in their rooms? Do they do combined consultations with other therapists? Do they do play groups or one on one sessions? At your first appointment get a sense of how the physical space feels. Is the space kid friendly and welcoming? Are age appropriate and clean toys and books available in the waiting area? Do reception staff welcome you, know who you are and make you feel relaxed and comfortable? Is there accessible baby change and toilet facilities?

What can you expect at your first Physio appointment? You should feel comfortable and find it easy to talk to the physio. Do they listen to you and ask about your current concerns for your child, the goals you may have for them, any past history and treatments undertaken? Are they knowledgeable? Do you feel they are capable and caring? The physio should take time to relate to your child and make them feel comfortable too. Cooperation is about understanding and effective communication. Your child should have fun during the assessment.

Movement Solutions Physiotherapy and Gym welcomes children and adolescents of all abilities. We provide rooms, home and hospital visiting for movement, developmental, postural and gait issues. We advise on equipment, splints and footwear and provide rehabilitation following surgery or injury.

• Shop 1/26 Eva Street, Coorparoo QLD • T: (07) 3324 2490 • E: reception@movementsolutions.com.au • W: movementsolutions.com.au

tips for choosing a

Physio

The physio should explain what will happen in the physio assessment process. Assessment initially involves an interview with you and getting a brief background history. They will then look at your child’s posture and movement. Depending on the age of the child this will be done through play. Some areas they will look at are age appropriate development, flexibility, and balance, strength and co-ordination. The physio should discuss their assessment findings with you in a manner you can understand and welcome questions from you. They should explain any treatment options, guiding you on why to choose a particular intervention. They should outline a plan of intervention and a time frame for reviews if needed. If your child is old enough the physio should also discuss the treatment options with your child in a manner they can understand! The physio will also outline ways you can see how things are changing or progressing. It may be that your child acquires a new skill – such as crawling or hopping. It may be a measurement to show how a knee is now straighter. It may be that your child is no longer in pain. Very often you will be given suggestions for activities to do outside of the physio session. Expect to come away with practical user friendly suggestions tailored to your child’s ability. Dace Johnson is a Physiotherapist with Movement Solutions Physiotherapy Practice which aims to maximise your child’s physical potential.

S pecial feature

September 2014

Clifton Hill Physiotherapy is a centre of excellence in Paediatrics providing a comprehensive approach to a wide range of conditions. Our Paediatric staff have, over 50 years combined experience, treating children with neurological, developmental, bladder, bowel, musculoskeletal, orthopaedic and sporting paediatric conditions.

Providing active treatment programs for the newborn to 18 years old. Physiotherapy treatment provided for children with neurological conditions, developmental concerns and delayed gross motor issues. Treatment also provided for general paediatric conditions; plagiocephaly, toe walking, in toeing, and more.

• 111 Queens Parade, Clifton Hill VIC • T: (03) 9486 1918 • E: admin@cliftonhillphysiotherapy.com.au • W: www.cliftonhillphysiotherapy.com.au

• Kells House, 87 Buckley St, Moonee Ponds VIC • T: (03) 9917 2884 M: 0412 880 528 • E: m.xenitelis@bigpond.com • www.paediatricphysiotherapycentre.com

with We have some great prizes to be won including those featured in this issue of Source Kids. Enter online at www.sourcekids.com.au/competitions for your chance to WIN! Terms and conditions can be found on the competitions page.

Introducing

with experts We are giving our readers the chance to ask those burning questions you’ve been meaning to ask but keep forgetting, and we will have our expert team answer them for you! Simply send your questions along with your name, phone number and email address to editor@sourcekids.com.au and we’ll have your questions answered. We will be featuring some of the Q&As in each issue of the magazine and will also be including them in our regular eNews and social media.

online

Love this issue of Source Kids? Want to know how to get more? Log on to www.sourcekids.com.au and subscribe to receive our online eNews, filled with fresh, inspiring and entertaining articles, straight to your inbox every fortnight!

Choosing your therapist

Choosing your

Psychologist WORDS | Dr Mickaela Schelleman

There’s nothing “wrong” with my child…why would I need a psychologist? Aren’t psychologists only important for kids who are mentally ill or out of control? No! Whilst psychologists provide invaluable support to children with mental illnesses, and are your experts when it comes to managing behavior, a psychologist’s training and skills extend beyond this common stereotype. Psychologists can help children with: • Behavioural concerns at home and school • Developmental challenges • Academic struggles • Social and play skills • Depression, anxiety/meltdowns and anger management • Sleeping, eating and toileting problems • Developing self-care skills • Relationship problems with family members and friends Psychologists can also offer comprehensive developmental/ behavioural interventions that cover a range of developmental areas such as play/social skills, language, selfcare, and behaviour within the one program, e.g. The P.L.A.Y. Project (Play and Language for Autistic Youngsters) and The Early Start Denver Model (ESDM). How do I decide if a psychologist could benefit my child?

Do any of these statements sound familiar? • “ My child does not listen to anyone…he only does what he wants to do” • “I cannot reason with my child” • “My child can’t control himself when he gets angry” • “ My child has meltdowns/tantrums and nothing I do works” • “ We want to expand our child’s capacity to cope with change” • “I can’t understand what my child is trying to tell me”

(www.psychology.org.au) has a list of psychologists who specialise in different areas.

What should I find out before deciding to commence therapy? When engaging a psychologist (or indeed any health professional), ask: • Which evidence-based interventions do you offer? • How will you assess which of these interventions is best for my child/family? • How is the psychologist qualified to deliver this intervention? • How experienced is the psychologist in delivering this intervention? • How long does the intervention take? How many sessions are required? • How much does the intervention cost? • How will I know if the intervention is working? • What will you do if the intervention isn’t working for my child/family? Dr Mickaela Schelleman (Senior Psychologist/Director, TLC Psychology) specialises in services for high developmental, behavioural, and learning needs, including children on the autism spectrum. Dr Schelleman delivers both comprehensive developmental/behavioural interventions and interventions for specific problems at home/school, and specialises in servicing rural areas throughout Australia. Interventions are available in person and via video-link/online.

If so, seeing a psychologist could benefit your child. Psychologists are required to ensure that they deliver evidence-based intervention; this means that, no matter what problem they are helping you to work through, the intervention they choose has to have been shown to work.

How do I make sure the psychologist can meet the unique needs of my child? Psychologists are experts in human behavior. However, following their general training, psychologists specialise in an area. This means that not all psychologists will be experts in the areas you want to work on, or indeed experts in working with children. The Australian Psychological Society (APS)

TLC Psychology offers a range of individualised services to children of all needs and abilities and their carers. Services include, one-to-one sessions, educational and developmental programs, including home and/or school based programs, and group sessions for children and/or parents.

• 61 Howick Street, South Launceston TAS • T: (03) 6343 2931 • E: info@tlcpsychology.com.au • W: www.tlcpsychology.com.au

S pecial feature

September 2014

Choosing your

Speechie Words | Heidi Hoskings Be it speech or language or many other issues such as stuttering, feeding or autism, you might be in search of a speech pathologist for your child. Where do you start? How do you find a good one? Here is a list of things to consider: Firstlt, we are supposed to be ‘communication experts’, so expect extremely good communication with your speech pathologist! Like any professional, there are the good ones and the ‘notso-good’ ones. Always keep that in mind before forking out, consider government services, generally through a community health centre or maybe a hospital. These are free but might have a long waiting list so don’t delay. Many very passionate speech pathologists choose to work in private practice to do it their own way (and avoid government issues!), so you can certainly find some fantastic ones there too. If looking into a private speech pathologist, have you looked into an Enhanced Primary Care (EPC) plan? (this entitles you to a maximum of five rebated sessions – you’ll surely have some gap fee, per calendar year). Ask your GP about this or the speech pathologist that you have chosen If you sign up to a private speech pathologist, do you know roughly how long you’ll need to be going for? I used to have families thinking they would solve their child’s speech delays using their five EPC sessions when in fact, it would probably take years of therapy If a speech pathologist has the letters CPSP after their name, this means ‘Certified Practicing Speech Pathologist’ and they have chosen to sign up to seeking out professional development each year. Consider the difference between those that offer 30-minute sessions versus 45-minute (or even 1 hour sessions).

Sometimes short and regular sessions are good, but other times the child will only just get into the 30-minute session right when it is finishing Another thing to think about (if you get a choice), is to do ‘chunks’ of therapy. You might go for a term, then have a term off. Sometimes kids do have ‘spontaneous recovery’, so at least you can assess this while you have a break. Regular, ongoing therapy can also be draining and monotonous for some kids (even though we do make it pretty fun!) and also the parents/siblings. And once you have started seeing a speech pathologist: do they encourage you to sit in on the sessions? (this allows you to see if your child is truly progressing and to take ideas for home) – I don’t feel there is any good reason for a parent to be asked to sit outside of the session. This just makes it easier for a speech pathologist to be a bit ‘lazy’. Do they listen to you? Do they encourage you to make goals with them? If not, do they tell you of their goals? Do they explain what and exactly why they are doing it? Are they wellprepared? Do they give you ideas for home? Remember to constantly assess if you are making progress and if not, move onto a different speech pathologist. I am constantly surprised to talk with families who have been seeing other speech pathologists that can barely tell me what they are working on and when questioned they sit back and realise their child has made NO progress after continued therapy. Of course there are the good stories too though! Always ask questions if you are unsure of anything. Heidi Hoskings – Speech Pathologist Visit Heidi’s blog at iraisemykids.wordpress.com

small TALK

speech therapy

•

Speech Pathologist & Teacher (Advanced qualifications and experience in speech pathology and education); Quality speech pathology for all speaking, listening, literacy and social skills concerns FaHCSIA, Better Start, HCWA & Medicare provider. Teaching your child to: ‘Speak Well, Listen Well, Read Well, Spell Well.’

We help children with communication difficulties find their voice so they can engage with others in their world. We are FaHCSIA, Helping Children with Autism and Better Start providers as well as NDIS providers.

• T: (07) 3324 1114 or M: 0419 715 953 • W: www.speechteach.com.au

• T: 1300 651 704 • W: www.smalltalkspeechtherapy.com.au

•

September 2014

Kids go Riding T

he connection between animal and man has long been renowned as powerful and remarkable. But for one organisation helping those with special needs, the bond developed between child and horse is changing lives. “We have huge success with children with Autism,’’ explains Riding for the Disabled Executive Officer Karen Aspery. “We’ve seen children, seven and eight years old, whose first word they speak is the name of their horse, which is an amazing thing and very rewarding.’’

being offered. It gradually gained momentum and went on to become a nationally accredited program that now has 91 centres across Australia with 3100 clients and 3000 volunteers. “It was a long process to learn how to get it right and now there are lots of fantastic facilities, training programs for the horses, policies and procedures to make it safer and really well trained coaches,’’ she informs.

The horses Karen speaks of are specially trained animals – 1000 of them around Australia – who are involved in the Riding for the Disabled program.

Karen says Riding for the Disabled does not discriminate – it caters for a myriad of physical and intellectual disabilities. Clients range from three to 80-years old, and include riders with severe physical limitations including people in wheelchairs. “Our highest client population is boys with autism aged between five and 14,’’ says Karen.

The program started 40 years ago in Australia after a couple emigrated from the UK and found there wasn’t anything

“The horse proves to be a conduit between the client, the child, and bringing them back into the world. Autism sufferers

Mia Perry Six-year-old Mia started riding three years ago and is well and truly living up to the motto of Riding for the Disabled – Developing Abilties, Enriching Lives. Mia was diagnosed at three with Angelman Syndrome, a complex genetic disorder that primarily affects the nervous system. Her anxious parents had researched the benefits of hippo-therapy and within a week of finding an RDA centre, Mia was on the horse (pictured here riding Casper). It has done wonders for her balance and confidence and she often can be seen sitting proudly atop the horse waving to her parents like the queen! Despite still having separation issues, she has gone on to win numerous competition ribbons with her riding and is the face for RDA for its annual Awareness Week. Anyone wanting to find out more about volunteering or accessing the program can visit www.rda.org.au

September 2014

K are overwhelmed by sensory input of the environment and the horse calms their body and they start to learn and understand educational concepts and they start to learn language and engage with the world.’’ Karen is also a coach with the organisation, having learned horsemanship from her father. “My dad had Cerebral Palsy and worked with horses his entire life, working them in, and he taught me to ride, so I knew there were benefits and opportunities for children with special needs,’’ she says. “Horses are a companion animal – they have remarkable healing qualities. Stroking an animal can reduce blood pressure and stress. They are also flight animals so you must be calm when you are around them because they react to stress. “For people with a physical disability, it is a 3D movement, so for people who can’t walk or can’t balance, it strengthens their muscle tone without having to bear weight. They may come to their lesson on a walking frame and the warmth of the horse warms and stimulates their muscles and after a 45 minute lesson we often find that they can walk several steps on their own.’’ Lessons start off with basic rules and becoming accustomed to the horse and progress though basic controlling of the animal to specific outcomes, whether they be learning team work, hand-eye coordination or in some cases, competition. Despite the amazing stories of success as a result of the program, ensuring its future viability is always a struggle. Volunteers are always in demand, as it sometimes takes three people to help one rider. And finance is a challenge. The national office is funded through the Australian Sports Commission but fundraising from the dedicated volunteers is key to the program’s success. “We need more volunteers and resources to be able to grow,’’ she says. As we go to print, Riding for the Disabled is dedicating efforts to an awareness week to ensure it continues to help young people like Mia (see breakout) continue to ride. We say ‘giddy up’ to that!

Karen Aspery Executive Officer, RDA Australia Level 2 RDA NCAS Coach

aren joined the not-for-profit sector in 2005 after 23 years working in the welfare sector of the Federal Government. She was looking to combine her love of horses and riding into a rewarding career. Growing up with a father with Cerebral Palsy (left hemiplegia), Karen knew that horse riding was a fabulous sport that people of all abilities could enjoy. Karen learnt to ride from her father and it was an activity that they shared, owning horses together over the years. In her spare time, Karen still enjoys riding and on the weekend, teaches riders with disabilities at her local RDA centre as a volunteer coach. As the Executive Officer of RDA Australia, Karen brings a background of policy development, risk management, strategic and human resource planning. She has developed and delivered numerous training programs for coaches and volunteers and participated in the writing and development of the RDA national coach education framework. Karen has also delivered RDA coach training overseas, presenting in Malaysia and New Zealand. They say “do what you love and you’ll never work a day in your life”. The outcomes for RDA riders are so rewarding, and the fact that every Saturday I am in the arena working with riders and horses and seeing the big smiles on everyone’s faces makes pushing paper around my desk during the week to make this organisation stronger and better, that much more relevant.

September 2014

Lions Club

funding

If you have a child with special needs and you aren’t related to the Packers, chances are you’ve needed specialised equipment for your child and had a minor panic attack when you saw how much it cost. Funding and special needs just seem to go hand-in-hand. But not all funding is through the government. If you’ve ever bought a Christmas cake from a stall outside a supermarket just before Christmas, you’ve probably met a ‘Lion’. The Lions Club of Australia has branches meeting in suburbs throughout Australia, who fundraise specifically to help others. If you need to acquire a specializsed piece of equipment for your child, why not contact your local club and see if they can help? The Lions Club of Australia funds a range of aids and equipment, so we spoke to Michele Lipner of the Lions Club of Peregian about how you can access funding too.

How do you determine whom to support?

The Lions Club of Peregian supports our community through service and fundraising. Our fundraising is a major avenue for responding to the needs of individuals/families, community groups and charitable organisations. We base our determination for support on a number of considerations. Each request will be treated equally with the following questions used to help inform our decision-making: • Is the request local in origin, for example from Peregian or nearby? With that said, we are also quite responsive to needs for support that are more regional in nature, particularly in relation to disaster response (i.e. drought,

floods etc.) when the scale and scope of the disaster requires a collective response. We also respond to requests from other local Lions Clubs for support if the ability of any one Club is insufficient to meet a particular need. • Is the request based on specific unmet needs? • Would responding favourably to a request provide a social safety net not otherwise being provided by others? • Will our support help our local community and/or individuals in our community? • Are the amount of funds requested, reasonable for us to contribute either singly or in cooperation with our Lions and Lioness Club colleagues in the area/district?

How would someone apply for support? We receive requests from a number of sources: 1) P eople will go to our website – and email us with their message or request.

2) Requests are referred to us from local schools and charitable organisations. 3) Members are approached directly for support from the community; other Lions Clubs; Lions Club International. Usually, if an application for support is being requested, the process is quite informal. All the individual/organisation needs to do is contact us and provide a brief summary on the nature of the support, for whom, the funds being solicited; and an indication of other funding sources.

3 4

Do you have a financial limit?

We are limited only by the amount of funds we are able to raise in any given year. Since we became incorporated in 2009, we have raised over $100,000 for charitable causes and community projects. In this last fiscal year alone for example, we raised over $26,000 to help those in need.

Do you have to decline some requests?

We do decline some requests, but also try to refer those requests that are reasonable, to either other Lions Clubs for action or to other organisations better able to respond. To find your closest Lions Club visit their national website www.lionsclubs.org.au

September 2014

Maintaining motivation to do something every year for 20 years takes some dedication – but for national fundraising initiative Give Me 5 for Kids, it’s a no brainer.

Examples of how money is spent by hospitals include:

Every year, hundreds of radio and television employees from Southern Cross Austereo dedicate the entire month of June to the cause - because they know that, as a result, sick children in hospital and their families receive extra help and better facilities.

Glidescope $

Southern Cross Austereo Regional General Manager, Tasmania and Northern Territory, Craig Davies, says it’s the company’s most heartfelt initiative. “We are very proud of the contribution we make to the community through GM54K,’’ Craig says. “Every year, we invest hours of time and effort into organising the wide array of fundraising activities, but knowing that we are making a difference in the lives of sick children makes it all worthwhile. “I regularly run into nurses from the local hospital and they always make a point of letting me know how important the latest piece of medical equipment purchased by GM54K has been. The GM54K campaign is by far the most rewarding work I have ever been involved in.” Southern Cross Austereo’s GM54K initiative started 20 years ago as a way to use five cent coins that could not be used in parking stations. For SCA employees and a large cast of volunteers – including family, friends, businesses, celebrities and hospital staff – finding new ways of raising money is always a fun challenge. There are bike rides, concerts, auctions, bingo nights, golf days, duck races, car wash days, telethons, movie nights, raffles, luncheons, balls, tin rattling and wheelie bin walks. Across Australia, the appeal has raised more than $12 million during the last two decades, benefiting over 40 children’s hospital wards. This year, more than $1.8 million has been pledged.

20,000

A machine that enables intubation of very small and difficult airways safely. It is a video camera that shows in real-time a clear picture of the airway and is used for difficult anaesthetics and for teaching purposes.

Small telescopes that can look down baby and infant airways. These are particularly useful to remove foreign bodies that babies may have inhaled into their airways. Currently, small children who inhale foreign bodies need to go to Brisbane for removal, now that we have a Critical Care Unit for children and this equipment it will enable more children to have this procedure done locally.

Baby bronchooesophagosopes

23,000

This machine allows staff to look at children who are at home while in a palliative state to accurately assess their medical state. This will be used by our oncology and palliative care staff to be better able to assess children while they are at home rather than having to be in hospital.

Portable vital signs monitor

1,500

A unit that allows real time visualisation of the upper airway when a child is being intubated in an emergency. It allows a much safer intubation to allow a breathing tube to be placed in the upper airway safely. It also allows the images to be recorded and used for teaching purposes.

C-Mac laryngoscopy unit

1,500

September 2014

Building

community Words | Jen Kyriacou

A couple of years ago, my husband and I found ourselves very lonely and as a family we were becoming more and more isolated. Our daughter had been diagnosed with a rare genetic disorder two years prior and after the grieving process we were still struggling to move away from some of the anger. We found ourselves in a circular conversation - “others just don’t understand how hard it is to be us”, “we have so little help” and “why don’t they want to help us”. Our journey was beginning to look full of self pity. The long and the short of it was that our family wasn’t living the life that we had imagined. I had envisioned a life for my family that was full of fun, good conversations, barbeques with kids running around, camping trips with other families, and just general frivolity and adventure. That was my plan and we weren’t anywhere near it. In the midst of this, we were invited to attend our local disability agency’s workshop on “Creating a Meaningful Life”. It was a beginning step in envisioning for your child: how do you see your child’s life being in the future? Let’s be honest, I wasn’t just invited, I was pushed, by our agency to attend. So there was a lot of reluctance on my part. Although we were isolated, we couldn’t see how life could be any different. So off we trotted, as a couple, to attend and then the forces of nature intervened, which meant that I had to attend the workshop on my own. They started talking about getting people involved in your life; how our children are safer when they are well known to others; how important it is for your extended family to be involved; and how creating community is possible regardless of your child’s disabilities. This was where the tears began. And they continued throughout the days that the workshop went on. I was far from your perfect attendee. I argued, I cried, I questioned. This workshop had struck a nerve so deep within me and it was incredibly painful. I walked away still unsure how I could ever implement their strategies. But the presenters’ voices echoed in my head with their suggestions and strategies for creating community for us as a family. We had to find our own way. Some of their suggestions

didn’t pan out but that was okay because there was always another path we could go down. It was always going to be hard work to begin with and it certainly meant pushing us out of our comfort zone. Fast forward two years and how are we travelling? Well, we have so much community that to be honest we can’t fit it all in. There are very few weekends that we aren’t visiting friends; family holidays are easily organised; and our children feel part of a community both through their schools and our wonderful neighbourhood. It sounds lovely, but there were some very practical steps that we took to make this happen: all of them learnt through the workshop and through other parents. This is what has worked for us:

Make it concrete You know how you catch up with the school/soccer/guides mums and dads and you chat about how it would be nice to go out for dinner one night? Be the person who whips out their calendar, or sends the email, to make it happen. Everyone is always waiting for others to instigate. Be that person. And if it doesn’t work out, don’t take it to heart. Try again. A lot of our friendships started with morning coffees, playing together in the local park, dinners with the mums, then including other families, and moved onto holidays.

Put yourself out there It’s just that simple. Make the call. Send the email. Give it a go. It isn’t just families with a disabled child who are isolated; many families feel the same but just don’t know how to get it started. You can be that person. We had to really put ourselves out there, but the payback has been incredible. It’s hard, I know. Nobody wants to be rejected!

Give people a chance Our kids with disabilities can be very complex with their behaviours, communication, physical and sensory challenges. We’ve had time to get used to these over years but it can’t always be said for others who haven’t had any previous interaction with people with a disability. Give them a chance and give them time. There have been many first meetings that we’ve had with new friends who have been very unsure of how to interact with our daughter. But we have given them, and our daughter, time, and allowed everybody to get to know each other. The result – these people have become Lucy’s biggest advocates and cheer-squad. It was absolutely worth the wait.

September 2014

Keep It Simple Stupid (KISS)

Be reciprocal

In the past, conversations about inviting people over would start like this: “I know, I’ll have Sue and Steve over for dinner”. The next thing you know, I’d have the Woman’s Weekly Cookbook out and would be catering a five-course dinner in my head. Then, when it all seemed too hard, I’d shut the book and it’d never happen. This is where the KISS principle is so important. If things are easy, they are enjoyable and then you feel as though you can do it all over again. A simple neighbourhood sausage sizzle is more enjoyable than a frazzled mum trying to cook a gourmet dinner for 20! You also will need to deal with all the extra issues in a night that other parents don’t have to worry about. You’ve got medications to be administered, feeds to be done, physically supporting your child with the other kids, or even dealing with a melt down. Make it simple, therefore making it relaxed and everyone will enjoy it. Don’t want to have something at home? Find a local park and invite the neighbours down to join you.

I can talk to you for hours about the appointments my daughter has had this week and our challenges but sometimes I even bore myself. Don’t forget to check in with others to see how they are travelling. I love the saying “People won’t remember what you did. People won’t remember what you said. But people will always remember the way you made them feel”. One of the mums at the workshop had a great idea – she kept a notebook by the phone so she could jot down notes to help her remember what was happening in her friends’ lives. With everything that we have to deal with it can be hard to remember, but it can mean the world to your relationships.

It’s going to be harder for you than for everyone else I can’t remember the last time my husband and I ate at the same time at a BBQ or dinner. You are going to have to deal with more than the other families on your family camping trip. But here’s the really amazing thing we learnt. You can endlessly tell someone how hard your life is but if they spend time with you as a family, they will see and understand it first hand. People want to help you and by spending time together, they will begin to truly understand the complexities of your family life.

Something will have to give You can’t put time and energy into this and expect to be able to do everything else as well. You’ll just have to find something that gives. For us it was physical therapy. Our vision of children with friends and community was more important than our daughter using a spoon. For now. We’ll get back to those things later. I’m not by any means saying it is easy. It’s sometimes hard, and scary. I am saying that it is absolutely worth it. We have more support available to us, we have a lot more laughs and the conversations aren’t full of self-pity, they’re about fitting it all in! It is a journey that is ongoing. We have realised that although we have this amazing life, our daughter doesn’t have her own tribe of friends. No playdates or birthday parties. So we need to start the process of supporting Lucy to find her own friendships that aren’t attached to our, or her brother’s, friends. Again, it is all scary. New friendships need to be made. But if history is anything to go by, it will be worth it!

September 2014

Sensory toys Twiddle A great way to keep your fingers busy while your brain is working on complex problems. www.windmill.net.au

Robot Flexi Toy Fun! www.windmill.net.au

Rainbow Sensory Sound Blocks Colourful blocks that children will love to unpack and sort and shake for different sounds. Looking through the blocks, they see the world in a number of different colours. This sensory toy stimulates curiosity, motor skills and colour differentiation. Available from www.cleverstuff.com.au

Touch And Match Match the texture on the piece to the texture on the baseboard. Available from www.cleverstuff.com.au

Kinetic Sand Squishy Letters

Stainless Spheres Great for children to discover different perspectives. Available from www.cleverstuff.com.au

A set of 26 colourful lower-case letters, perfect for encouraging letter shape recognition, word formation and sound. Made from durable plastic filled with colourful liquids, oils and sparkles. Also suitable for light boxes, water trays and sand pit. Available from www.cleverstuff.com.au

Kinetic Sand is easy-to-shape indoor play sand that moulds into simple desktop designs. Playing with Kinetic Sand is a magical and mesmerising experience, giving a moment of relaxation. www.windmill.net.au

Oogi

Tangle Hello It’s Me Puzzle This interactive puzzle is great for developing fine motor skills. Available from www.cleverstuff.com.au

A great fiddle toy to keep busy hands occupied. Eighteen curved jointed sections to twist and manipulate into limitless contortions. Available from www.windmill.net.au

Oogi is an irresistibly tactile and expressive new figure toy that is 13cm in height and is available in red or blue. It has a suction cup head, hands, feet and long stretchy arms; it connects to any smooth surface. Oogi’s can happily live on bilibo’s and be seen in bathtubs, fridges and mirrors. They are very social beings. They love to touch, embrace, form chains and do crazy acrobatic tricks. www.windmill.net.au

September 2014

ʹͽͶ·Ͷ΃΄΅Άͷͷ www.cleverstuff.com.au

Reusable pouches

Australia’s best boutique educational toy specialist

With so many uses, affordable Sinchies are the healthy and environmentallyfriendly answer to the throw-away yoghurt, smoothie and fruit crush pouches. With the added reassurance of homemade goodness on the inside they are BPA free, freezer and dishwasher safe. Sizes from 80mL to 1litre.

www.sinchies.com.au or phone 0424 351 545

Calming Kids Free

Code: Shipping

ping2014 freeship

Toys for Sensory, Fine Motor, Gross Motor, Language Development and more. Award winning educational toys that make a difference.

Phone 1300 552 500

Dedicated to enhancing the lives of children with special needs, all of Calming Kids products are carefully designed and sourced with the guidance of registered occupational therapists and physiotherapists. Weighted blankets, vests and wrist cuffs.

Exclusive Australian supplier of Squease inflatable pressure vests.

Ph 0439 958 048 • www.calmingkids.com.au

Established for over 30 years

Bringing you sensory and educational Toys Ph 0400 375 351 or visit www.thetoybug.com.au

Childcare for children of ALL abilities At Hummingbirds we welcome all children regardless of their developmental needs, diagnosis or prognosis and offer an educational, therapeutic, social and nurturing environment. Services include day care (including before and after school care), weekend and vacation care with qualified, knowledgeable and understanding staff. Contact us to talk about how our services can work for you and your child.

Phone 0412 363 856

www.hummingbirdseies.com

Suppliers of educational equipment, toys and resources for special needs, primary school, pre-school and playgroups. MELBOURNE 591 Whitehorse Road, Mont Albert VIC 3127 (03) 9830 4336 ADELAIDE 252 The Parade, Norwood SA 5067 (08) 8332 5262 LAUNCESTON 256 Charles Street, Launceston TAS 7250 (03) 6334 9996 HOBART 243 Harrington Street, Hobart TAS 7000 (03) 6231 0499

www.windmill.net.au

September 2014

Reaching for

Rio Maddison Elliott – 15 Swimmer

She represented the country in London, and Maddison Elliot has her heart set on Rio. The 15-year-old Cerebral Palsy sufferer from New South Wales, started swimming lessons at six months to ensure she was safe around her grandparents’ pool. “I started competition swimming at the age of six or seven after watching my sister compete and win medals. I wanted to win one,’’ Maddi says. And win a medal she did! Maddi lists as her greatest achievement representing Australia at the London 2012 Paralympic Games and breaking the 50m Freestyle World Record for the S8 classification twice within a month. She says swimming has helped her with her disability. “In the beginning I was swimming to help with my disability. Being in the water helped my muscles and allowed them to move freely. I do find though that after a big swim competition I do get very tired muscle-wise.’’ Her greatest advice to anyone wanting to succeed? “Enjoy the moment. I was picked for London to give me experience for Rio and was never expected to achieve what I did at such a young age. It allowed me to be calm and focused and enjoy my time,’’ she says. “Never give up. If someone tells you that you can’t do something because you have a disability, then try your hardest to prove them wrong. You might be surprised at what you can do even with a disability.’’

September 2014

Paralympic Profiles Jesse Aungles – 18 Swimmer Jesse Aungles was a water baby and now he’s quickly becoming a golden boy of swimming. The 18-year-old from Adelaide, who was born without both his lower legs, first ventured into the pool as a toddler. “I think I was about two years old and the swim teachers, parents and life guards etcetera had their work cut out for them trying to convince me to get out of the pool,’’ Jesse explains. “From then on it was pretty clear (I would be a swimmer).’’ Motivated after failing to make any national teams in the past four years – including the London Games –Jesse just won a silver medal in the Men’s 200 metre Individual Medley SM8 at the Glasgow Commonwealth Games! And then, his attention will turn to Rio – where gaining selection is a simple proposition for him. “Keep improving!’’ he explains. “Everybody else wants to be there too and everybody else is extremely talented. Paralympic sport is expanding and becoming more competitive by the day and it’s fantastic. Now I just have to keep up! “Our national selectors will choose 30-40 people from our Australian Olympic/Paralympic trials in 2016. Anyone within the 1st-6th ranking may have a chance but of course this is just how it usually works and there is no criteria out as of yet. They like to keep it under wraps until selection time. So far I have a 3rd in the world ranking, so I’m allowing myself a small reassurance.’’ And it’s just not the pool where Jesse dedicates his attention. As we go to print, Jesse will start a course at the University of Canberra (international relations/politics and commerce double degree). It will be a juggling act to balance 10 swimming sessions, two gym sessions and one Pilates session a week with his education. “It will be an interesting challenge and I look forward to it,’’ he says. “But looking around at my competition and most other athletes, you see the same drive, focus and determination.’’ And as for his disability – he says swimming is a great leveller. “Sport doesn’t discriminate who it benefits,’’ he says. “After sharing the emotions that come with the winning and losing, the good, the bad and the 4am training sessions with your team, your club, your squad, whatever, you’re a family. It’s definitely one of those pretty special things in life. That’s what I will take away more than anything. “I’ve seen some people with the most limiting disabilities you could imagine, they’re still world champions living their dreams. There is nothing stopping you. Nothing. Go and have fun.’’

September 2014

Rheed McCracken – 17 Wheelchair track and road racing

Rheed McCracken has gold on his mind, after winning silver and bronze medals at the 2012 Paralympic Games in London. The 17-year-old from Bundaberg has been involved in sport since he was seven, having taken an interest watching his older sister compete in soccer and athletics. “I’d always aspire to be like her when I was growing up,’’ he says. With the title of Queensland’s best athlete with a disability in 2013, he’s gone above and beyond his early ambition. Competing in London at 15 was a career highlight, having first represented Australia at 14. His biggest challenge during his short but successful career has not stemmed from his Cerebral Palsy. “The biggest hurdle I have had to overcome is being told ‘you’re too young to make it, you need to wait until you’re older’,’’ Rheed says. “This for me was a wall I had to overcome. We will all have adversities in life but nothing is impossible. I proved that age was no barrier in London – when I got there I went in with confidence and came out with the rewards I was hoping for. “The greatest pleasure in life is doing what people say cannot be done.’’

The school student says he would probably be considering a university degree had it not been for wheelchair racing. Reaching for Rio sounds like a much better proposition! “To be selected for Rio in 2016, you not only need to do qualifiers for your chosen events, you must have a mental strength that goes beyond your sport,’’ Rheed explains. “You can be the fastest person on the track but if you can’t hold yourself in high pressure situations, that’s when you can let yourself down.’’ He encourages anyone with a disability to try out a sport. “It’s opened me up to a whole new world that I wouldn’t have known even existed,’’ he admits. “I think that’s what I aim to do in life – show people there’s a whole new world out there for people living with disability; you just have to take that leap forward and open yourself up because ‘who knows what’s around the corner?’ “You are who you are. And you are what you make yourself. If you want to be the greatest, be the greatest. There is nobody telling you what you can’t do. Open yourself up and don’t be afraid of trying new things.’’

September 2014

Launch Source Kids Launch We celebrated the launch of Source Kids on 24 July with some of our supporters, advertisers, distributors, family and friends at Cube Aqua. What a fantastic night and a great chance to raise our glasses to such a successful launch of Source Kids!

Celebrating 20 years of providing Occupational Therapy services to children on the North Shore and Northern Beaches of Sydney. We see children with: • Development delays • Autism Spectrum Disorder • Sensory Processing Disorder • Handwriting • Gross and Fine Motor delays If your child is struggling in class or you suspect a development difficulty call us today to see if we can help your child. Early intervention is the key. Service Providers for Helping Children with Autism and Better Start FAHSCIA funding.

Web: occupationaltherapy.com.au Ph: (02) 9913 3823

We aim to give each child the confidence and skills to feel happy and successful in all they do.

• Occupational Therapy • Speech Therapy • Aquatic Therapy • Social Skills Program Registered provider for Better Start, Fahcsia and Medicare. Phone: (03) 9872 5281 Web: www.thetherapyplace.com.au

September 2014

Medicinal Cannabis A groundswell of public support is yet to convince governments that medicinal cannabis should be grown commercially in Australia to produce pain-alleviating and seizure-controlling medication.

s we go to print, the company attempting a medical trial in Tasmania has also had its efforts to grow product on Norfolk Island vetoed by the Federal Government.

The story of Tasman Health Cannabinoids is littered with more twists and turns than CEO Troy Langman ever thought possible, but he still has hopes of being accepted in Australia.

THC was thwarted in its bid to trial a crop in Tasmania by the state’s Liberal Government. Health Minister Michael Ferguson has rejected the proposal, which was to work with the University of Tasmania to trial the growth, processing and administration of medicinal cannabis. The trial involved the growing of cannabis in a controlled facility, with the production of a medicine to be administered to cancer patients by university professionals in a hospital setting. The government stands by its conservative approach – it says cannabis is the most widely used illicit drug in Tasmania. “Consideration of any use of this substance must be balanced with the continuing misuse of the plant and the requirement to police the black market,’’ says Mr Ferguson. The government’s initial rejection of the proposal angered many people in Tasmania who see the state as a world leader in agriculture and scientific innovation. Farming groups say Tasmania could benefit from growing the crop on an island renowned for its quality produce and with strict controls already in place that have allowed the state to develop as the World’s largest producer of opium alkaloids for the pharmaceutical market. Norfolk Island jumped at the chance to fill the void – officially announcing it would allow THC permits to grow a crop for export to Europe and Canada, where medicinal cannabis is legal. But, as we go to print, the Federal Government has announced it has overturned that decision – Mr Langman says it raised health and safety issues. And so, the company’s future plans are in limbo. But around the edges, action and lobbying continues. The Tasmanian Legislative Council, the state’s house of review that is predominantly made up of independent politicians, is establishing a special parliamentary inquiry, with public submissions invited. “We welcome the Legislative Council inquiry into this issue

and hope this will allow for an informed debate in the community which will be respectfully responded to by the Government,’’ says Mr Ferguson. And an e-petition has also been launched. Mr Langman says he is happy that people are speaking up about the benefits of the drug – some risking prosecution because they are publicly admitting to using and administering banned substances. “People are contacting us on a daily basis desperately seeking this medicine and the relief it can provide. Many others are contacting us with stories of regaining dignity and normality in their lives having found relief in medical cannabis and wanting to inform others of its benefits.’’ Mr Langman says the company is disappointed by the Tasmanian Government’s stance and is now looking at other states to show leadership. He says a private members bill is being tabled in NSW to re-introduce medicinal cannabis for the terminally ill; the WA Opposition has committed itself to policy reform; and at federal level there is cross-party interest in policy change and a private members bill is being drafted. But Mr Langman also concedes it is going to be an uphill battle to convert general public support into policy change at a medical level. “I’ve had challenges finding support from an oncologist to be honest,’’ Mr Langman says. “It’s not very surprising – it’s clearly a black and white industry in the medical community and people either support it or they don’t. There is definitely a fear in the medical profession to even entertain the subject in fear they might lose their licence.’’ In the inaugural edition of Source Kids, the Australian Medical Association was adamant in its opposition to the drug, saying it was a health and social issue that causes harm to individuals and communities. But Mr Langman says some people are confused with what the product is – it is not traditional marijuana often inhaled as a cigarette, but administered similarly to mainstream medicines with measured dosing of the plant’s extracts. He says the public inquiry is a positive step but it’s cold comfort to Australians who “deserve access to the best available, affordable and medically supervised treatments’’. We will continue to keep you updated!

September 2014

Confidence Boost Confidence is key when it comes to the outcomes generated by the First Step Alliance’s Better Start Early Days workshop program.

uring the next 12 months, 1200 families will have access to workshops aimed at helping them after a child has been diagnosed with a disability and navigate their way through the raft of government support programs. “In the early days it can be really challenging,’’ explains National Program Manager Michael Bink. “You are coming to terms with the fact that your child has a disability and then coming to terms with what that means for the future potential of your child. There is so much information out there and it is so hard to work out what to do, so the workshops are a good starting point or refresher for people.’’ Better Start Early Days workshops are run by the First Step Alliance – which is made up by Cerebral Palsy Australia, Deaf Children Australia, Down Syndrome Australia, Fragile X Association of Australia and Vision Australia. Michael says the workshops are beneficial for those starting to access the $12,000 funding provided by Better Start or the National Disability Insurance Scheme. Many parents also use it as a contact-building exercise, to share ideas, stories and strategies with other parents experiencing similar struggles, Michael says. “We aim to build the capacity of parents so they are informed about the early intervention service system, they know what questions to ask their disability service provider and move them along the path of being able to help provide a brighter future for their children,’’ he says.

“It’s about capacity building – to make them feel more resilient to deal with what is a complicated system. Confidence is the best outcome we can hope for – more confidence in your knowledge and skills, confidence to plan for your child’s future and about taking the next steps.’’ Down Syndrome Victoria CEO Sue O’Riley says the workshops ensure families get the right information at the right time. “The workshops have been developed by family support staff with extensive training backgrounds, who understand the value of peer support as they are parents of children with Down Syndrome themselves,’’ Sue explains. “The workshops aim to create a sense of belonging, control and hope during a time that families may be feeling vulnerable, confused and alone. Feedback so far has indicated that they are hitting the mark, sometimes creating ‘light bulb moments’ for parents, and are very much appreciated.’’ The free one-day or two half-day workshops started in January and are funded until June, 2015, by the government’s Department of Social Services. First Step Alliance intends to run 100 workshops, limited to 12 families per event, in city and regional areas across the country. The workshops are limited to sufferers of a number of disabilities where early intervention is deemed pivotal to make a positive difference – they are Cerebral Palsy, Down Syndrome, Fragile X Syndrome and vision or hearing impairment. Ten less common chromosomal abnormalities are also covered by the funding. They are 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 Syndrome. For more details about the workshops and to register, see the website – www.betterstartearlydays.net.au, the back cover of this issue or find the program on Facebook.

September 2014

Profile

The

Bozikov Family Our family consists of: Mum (Claire), Dad (Adam), big sister (Scarlet, 5) and our special needs champion (Luca, 3)

We live: Suburban Sydney

Our child is dealing with the following disability: Luca has Kernicterus. Kernicterus or KI, is a type of brain damage caused by extreme jaundice. Luca’s jaundice peaked when he was three days old and as a result he lives with Athetoid Cerebral Palsy, a hearing impairment called Auditory Neuropathy and global developmental delay. On top of this he has survived two episodes of liver failure and bacterial meningitis. He’s a fighter!

How we manage that: One day at a time. We have ensured that Luca has access to all forms of early intervention; physiotherapy, occupational therapy, speech therapy, hydrotherapy and just recently, preschool! He also has a cochlear implant that he is still learning to listen with. We encourage Luca to experience all the same adventures as his sister, even when they need to be adapted to suit his ability. Our favourite place to go as a family is: We like to go down the South Coast. We make the threehour trek to visit family about once a month. We explore the beaches, have family barbeques, go for walks and take day trips to the surrounding towns. Long car journeys with Luca used to be quite treacherous as his constant movements make sitting in a car seat for long periods of time very uncomfortable. Now we make sure we take blankets and soft toys for Luca to cuddle and have packed enough food treats to keep Luca happy for long periods of time! We also take our family dog along whenever possible as his presence keeps Luca calm, and we play loud music on the journey, which Luca and his sister like to bop around to! It’s important to get out and about as much as possible for us, in order to keep our sanity in check, so even if it feels like a struggle sometimes, we force ourselves to do it.

Our favourite activity is: Exploring and playing! Luca loves to challenge himself on park equipment and at play centres. He often has me completely exhausted after an hour or two because he wants to do EVERYTHING! So of course I make sure I’m hovering around him every second and helping him when he really needs

assistance. Luca is very determined, very independent and likes to have a go at walking whenever possible. His walking is extremely unbalanced and he falls over every few feet but he always gets back up! If we go on long family walks, we always rely on the pram to give him a rest when he’s had enough. Swimming is another big winner with Luca, he just loves splashing in the water!

Our biggest challenge is: Communication. The older Luca gets, the more headstrong he is becoming and often he has trouble trying to communicate his needs to us. Luca can only speak a few words and sign a little bit, so often he ends up in meltdown mode, banging his head on the floor and crying in frustration when he’s tired or unable to get his request across. Luca does not really understand the concept of what is appropriate and what is not, so he is still learning to interact with other children his age. He is a big, strong boy and will often use his strength to push other kids out of the way, or grab their toys/food etc. Luca is a work in progress, as we all are but not everyone in the general community is quite so understanding of a large, tantrum chucking child who wants to push their child off the chair and rip up their artwork! Best parenting tip: Be pro-active. Advocate for your child. Get out there and educate people about your child’s condition. I volunteer for the Cerebral Palsy Alliance, visiting schools and presenting the ‘Just Like You’ talk to primary school aged kids. This teaches them about all kinds of disabilities and why they should include a special needs child in their friendship circle. At least I know I’ve tried my hardest to open the wider community’s eyes to people living with disability.

September 2014

The best advice we’ve been given: Take time out for yourselves, whenever possible. Exhausted, strung-out parents do not make for happy, encouraging parents! It’s natural to not want to leave your kids but even a couple of hours on your own can do you the world of good and help to clear a muddled mind.

And the most unhelpful advice (there’s always one): I’ve had a few incidences of people sticking their noses in when it wasn’t welcome, but generally I’m thankful that people don’t offer advice unless they’ve been in a similar situation and can actually help. The most annoying comments are the ones where people find it necessary to point out that my daughter needs loads of attention too! I know that, thank you! And trust me, we make sure we do lots of special things together: mummy/daughter days and all the rest. Scarlet is a mature girl who adores her brother and we are just as proud of her achievements as we are of Luca’s! We have more than enough love to share around!

This journey has taught us: That life is fragile. We really must make the most of every minute together. Bad things happen and we can either let them destroy us or we can pick ourselves up and keep going. We now see the beauty in the smallest of things and I know we have inspired others around us to do the same.

We would never manage without: The support of our family and friends. A little bit of kindness goes a long way when you live the daily struggles of a special needs parent. Having someone to lean on is so important.

Products we love: Our trampoline! We have a mini trampoline with a bar to hold onto, and a large enclosed one. Luca and his sister spend ages playing on it together and it’s a fantastic piece of equipment for learning to stabilise and strengthen your muscles. Luca’s balance has improved significantly since we got the trampoline! Chew necklace. Luca is very sensory and constantly needs to have something in his mouth. We find that oral chew toys are great, we can attach them to his pram or onto his clothes and he can chew away happily! You can also buy necklaces to wear so that when you pick up your child they have something to grab onto and put in their mouth instead of your earrings, hair etc! The adapted bed my husband made! When Luca was fast outgrowing his cot we were faced with a big decision – spend $5000 on a special needs bed you can order online, or build one ourselves! My husband decided on the latter and got to building a single bed with high sides (like a cot) that can be folded down to get in and out of safely, whilst still giving Luca the security he craved. It cost us less that $1000 and it looks fantastic! Luca loves it! Old Soles shoes. Looking at orthopaedic boots for Luca was quite depressing. Most of them are pretty unsightly and cost a small fortune as well. I discovered Old Soles shoes at the local shopping centre and they are fantastic. The boots are high cut, so they support the ankle, the leather is soft and they have enough space to accommodate Luca’s small orthotics. They come in a range of colours and most importantly he seems to walk quite well in them.

TheraTogs – Our most recent purchase, Theratogs are designed to help stabilise the body with a unique strapping method. It’s a two-piece suit that Luca wears under his clothes for as long as possible everyday, and he has much better control whilst walking when he has it on. He falls over a lot less and can stand unaided for up to a minute.

People (or businesses) we love: Therapies for Kids in Annandale. I heard about the work of Debbie Evans and her associates long before we made an appointment to see them. They offer physio and OT and the results are outstanding. When Luca started going there a year ago for physio, he could only bottom shuffle along the ground and now he is walking! I can’t praise them enough. The Royal Institute for deaf and blind children. Our speech therapist, Maree Rennie, received an Order of Australia this year and rightly so. Her work with deaf children is incredible and she is like a member of our family. She has organised help for me on several occasions when I was struggling, and is always the first to arrive if Luca has been hospitalised. We are so grateful for Maree. Sylvanvale. Sylvanvale is a disability services provider that also provides early education services. Luca attends their pre-school in Kirrawee twice a week and has learnt so much in a short space of time. The teachers are dedicated to the kids and they know them so well. Luca is learning sign language, is being taught to communicate via the iPad, does boot camp and hydrotherapy and has so much fun with his friends! All at Sylvanvale!

Wearable Therapy • Postural alignment • Sensory input • Send your Therapists’ hands home • Improve carryover of your treatment gains

Milestones Therapy are the Australian suppliers of TheraTogs, SPIO, and other quality products to help kids reach their developmental milestones. Therapists’, don’t miss our latest course – Paediatric Therapeutic Taping, coming to Sydney, Brisbane, Melbourne and Perth November 2014.

Ph 0434 853 145 www.milestonestherapy.com.au

September 2014

Kabuki Syndrome Across Australia there are just 75 families touched by a rare condition called Kabuki Syndrome. But, there could be many others living their lives undiagnosed, because of a lack of awareness about the genetic abnormality. “There is not a current database of diagnosis in Australia. It remains under-diagnosed because of a lack of awareness. Many parents of older children may not have revisited their geneticist since early years and remain undiagnosed,’’ explains SAAKS (Supporting Kids with Kabuki Syndrome) founder Peta Colton. Peta and her husband Adrian are parents of 16-year-old Zachary (see breakout) who was diagnosed with KS when he was six months old.

Kabuki Syndrome is a rare genetic condition that occurs in approximately 1:32,000 births. There are many features that can occur in Kabuki Syndrome but not all are seen in every child. Some of the features include: • Arched, interrupted eyebrows • Long palpebral fissures (the distance from the inner to outer corners of the eyes) • Large and low-set ears • Depressed nasal tip • Short stature • Skeletal abnormalities such as short fingers, loose joints • Intellectual disability • Cleft lip and palate • Cardiac abnormalities • Urogenital and kidney problems • Anorectal and intestinal problems • Immune abnormalities • Ear infections and hearing loss • Hypotonia

“Many babies born with Kabuki Syndrome spend many months in intensive care for a variety of life threatening problems including heart defects and pulmonary issues. “A number of children leave hospital with nasogastric tube feeding, or gastrostomy buttons, and some with oxygen therapy. “Once the child is home, a team of therapy specialists will assist with speech pathology, occupational therapy and physiotherapy, usually until the child is about five.’’ Peta says that many of the serious health issues experienced by KS children are usually resolved by this time. “However, ongoing support in the areas of fine and gross motor and speech may be necessary beyond the age of five. Regular specialist checks are done and often include a pulmonary specialist, cardiologist, endocrinologist.’’ Peta says that children with KS are often blessed with outgoing personalities but life is still full of challenges, as there is no cure.

More information can be found at sakks.org They established SAAKS and have made “Trying to choose schools is very it their mission to help other families challenging for parents. Many cope with the dramatic change in kids attend mainstream school; some choose mainstream circumstances that families face when a child is born with the for primary and more specialist schools for secondary,’’ rare syndrome. Peta informs. “We want to celebrate the achievements of all children and “Many children enjoy a variety of activities, their outgoing adults with Kabuki Syndrome, support families and caregivers personalities helps them to participate. by offering information, friendship and contact with other families, provide information to the public, raise awareness and provide information to the educational and medical sectors to increase awareness and aid in earlier diagnosis,’’ Peta says.

“There is a lot to be done to improve the quality of life in kids with KS including surgical treatment, medication, orthopaedic treatment, cranial facial surgery and cosmetic dental treatment, regular eye examinations and glasses.’’

Kabuki Syndrome is a rare genetic condition that occurs in approximately 1:32,000 births.

SAKKS has over two hundred members from every corner of the globe and has previously hosted three-day retreats, educational seminars and family days for those with a child with Kabuki Syndrome.

Children with KS often have arched, interrupted eyebrows, a long distance from the inner to outer corners of the eyes, large and low-set ears, are of short stature and have varying degrees of intellectual disability. “Every child with Kabuki Syndrome presents with a slightly different set of characteristics and in some cases characteristics may develop over time and not from birth,’’ Peta explains.

A Facebook page has been created to help raise awareness using photographs of kids with KS and inspirational quotes. “They have proven to be very popular with some posts reaching over half a million views a week,’’ Peta says.

September 2014

Case study

Zachary Colton Zachary Colton has the genetic disorder Kabuki Syndrome. The 16-year-old has two healthy elder sisters, Chloe and Holly, and his twin, Hannah, is also a healthy teenager. When Zachary was born doctors predicted he would not live. He proved everyone wrong – growing into a happy, young man who – even though he may appear as tiny as an 11-year-old - is thriving, says his mum Peta. “He has the most beautiful personality, he is so gentle and kind and speaks in a soft voice, and he is full of hugs and kisses and shares them throughout the day,’’ Peta says.

Peta says it is hard to describe the first five years of his life without a tear or two. “They were the hardest years of my husband, Adrian, and my lives,’’ Peta admits. “Zachary, along with his twin sister, was born at 31 weeks after a scan showed that our little boy had a condition called Hydrops. “They were both whisked away to NICU, where hour by hour we were coping with constant challenges. It felt like my heart was being ripped from my chest and being shoved back in only to have it pulled out again, time after time. “He had to be drained of fluid twice his body weight, his liver was very sick, his bowels were necrotising, and his lungs were sick and immature. Also, his heart had a pulmonary coarctation and he needed surgery to repair it. “He had a cleft lip and palate, he couldn’t swallow, and he had constant inhalation pneumonia because of his reflux. He was not expected to live. “Despite everything he went through, he survived and after a few short stays at home he came home for good on his first birthday.’’ Peta says he was diagnosed with Kabuki Syndrome aged six months. For five years, life for Zachary consisted of various therapies to help him with his fine and gross motor skills - walking, talking, swallowing and eventually eating and removing the peg that fed him via a feeding pump. Peta says it has been a challenge for the family, especially Zachary’s sisters. “We adapted to the changes in all of our lives, we are strong together, but outings were too difficult in the early years because of oxygen tanks and the suitcase of equipment we needed to just leave the house,’’ Peta recalls, “At five Zac was beginning to talk, had been walking for about a year albeit not well, and was commencing main stream school. His personality made his placement in school easy and he was loved by everyone. “Therapies dwindled and we were left with renal and cardiology appointments periodically just to keep a ‘watch’ on things. “By the time it came to going to secondary school, it was apparent that mainstreaming wasn’t an option because of his very tiny size and difficulty walking. “He attended a specialist school for three years and is currently being homeschooled by myself and is thriving. “We are working toward a career in cooking and every Friday Zac enjoys creating a meal in the kitchen for his family.’’ Look out Masterchef!

September 2014

10 bright ideas

to raise $ for your cause.

aising money for equipment, research, programs or events is vital for many charities and not-for-profits across the country. For many, this is their only

source of income in the absence of any grants or government funding. But raising money and negotiating sponsorships and partnerships has become increasingly difficult. Many groups are pounding the pavement, asking businesses to support their cause, either through cash or in-kind (product/service) support. This has put pressure on many businesses that are simply unable to support every great cause that makes contact with them. So we’ve put together our top 10, simple ways of raising money for your cause.

Fundraising Barbeque

Many hardware and furniture stores run fundraising barbeques over the weekends, which are their busiest days. They usually provide all of the equipment including the barbeque, gas bottle, tables, cloths, utensils etc. and you just need to bring your own food, drinks, sauces and money tin. You can approach your local shop or butcher to help with the cost of these to maximise the amount you make. All you need to do is write a letter on your charity or group’s letterhead advising that you would like to hold a barbeque and send it to your local Bunnings, Masters, Harvey Norman etc. Be prepared for a wait though, there is sometimes up to six or 12 months wait!

Run or walk

There are so many Fun Runs and running events now you’ll have trouble deciding which one to do. Pick your event – 2km, 5km, 10km, half marathon or marathon and then approach people to sponsor you to complete the challenge. Keep an eye out for events in your area or check out www.runningcalendar.com.au for a full list of running events across Australia. There are some great websites such as www. everydayhero.com and www.gofundraise.com.au that do all the hard work for you, you just need to create your profile page and include details of what event you are doing and your fundraising target. Don’t forget to share that link through Facebook, email and anything else you can think of so your family, friends and workmates know how to sponsor you.

Cause of the month

You shop locally all the time, right? Get your bread and milk fro the local store? Buy your coffee mostly from the same place each day? Why not ask them to nominate your cause for a month and help you raise some money? It’s very simple. Work with the store to decide what they will donate e.g. 20 cents from every coffee or 50 cents for every muffin sold during that month. You’ll be surprised how quickly it adds up for things we all buy daily like coffee and snacks. Whip up a sign to display at their counter if you can with a donations tin. This will raise awareness of your cause, give the business a plug for their support and often people are happy to pop any loose change in a donation tin, while they wait.

Put your skills to good use

Is there something you are really good at, like painting, craft, cooking, knitting, card making? Use your skill to help your cause by painting some canvases, cooking up a storm, getting crafty, knitting some beanies or making some cards and take them to your local market to sell. If you can’t make something you think will sell, why not ask a friend who is great at something to help you out? Chances are they will love to help and it could be great fun hanging out at the markets with them.

September 2014

Run a raffle

It’s an oldie but a goodie! Talk to local businesses you frequent regularly and ask them to donate an item to include in the raffle. It could be anything from meal vouchers, to groceries, a barbeque, a massage or even a car! Once you have your prize list, decide how much you will sell the tickets for and create a couple of posters that lists the prizes, cost of the tickets and when the raffle will be drawn. Buy some raffle ticket books from your local newsagent and then start selling tickets. You can attend events, set up a space in a busy area or put them in your workplace. Don’t forget to check with the event organiser, local council or your workplace to get their approval before you start selling. And of course check out the licensing for raffles for your state. The guidelines differ in each state so check with your licensing department to make sure you follow the rules.

Sell chocolates

This is another oldie but a goodie! Who hasn’t been tempted by that box of chocolates sitting in the workplace to fill the 3pm cravings? You can order the chocolates through Cadbury, all details are on their website www.fundraising.com.au and its really easy to organise especially if you have others helping to sell the chocolates. If chocolates aren’t your thing there are other organisations that use the same concept to sell bulk movie tickets, books, household items, plants or bulbs.

Workplace event

How about asking your workplace to support your cause? Away from our family, most of us spend the most amount of time at work. With the approval of your workplace, organise a morning tea and ask colleagues to bring a plate of something along and charge a gold coin donation, or have a casual clothes day with a gold coin donation. These types of events are a great way to get colleagues together and have some fun. Similarly, you might hold a workplace barbeque or fun day on a weekend to raise some dollars for your cause.

Garage sale

These have been around for a long time but are still

an incredibly popular way to grab a bargain. Ask family, friends, workmates, other families that support or are affected by the same cause or any other acquaintances you have, to dig out anything old they no longer use and hold a garage sale. Place a notice in your local newspaper and grab some balloons and signs to place around your neighbourhood to direct people to your garage sale. Then the bargaining fun (and money making) begins!

Movie night

Get a group of friends, family or workmates

together (or all of the above) and raise some money by charging a premium on the tickets. Contact your local cinema, most will sell you tickets below the retail price: you can set the price and any profit in between will go to your cause. To make this event a little more special you might like to contact a local caterer and/or winery to donate some food and beverages to have prior to the movie. This will add extra value to those attending and may mean you can charge a little more for the tickets. Get in touch with your local cinema to find out what movies they have coming up, what they can offer, how much notice you need to give etc.

Major fundraiser

Holding a major fundraiser can be a lot of work, but can also raise a lot of money for your charity or group. With any major fundraiser you will need six to 12 months to plan and organise the event. Gala Balls are very popular and usually include a silent and live auction, raffles, balloon sales, donations and some events create unique fundraising concepts just for their event. Another idea is to hold a night at the races. Get dressed up, hit the track and raise money for your charity or group. You can hire a marquee or room at the races, cater it with food and beverages, hold a silent auction, have live performances and enjoy a night (or day) of fun and punting. We would suggest you get a group of people together to organise an event like these, divide up the tasks and get busy – there will be lots to do, but the result is very worthwhile!

September 2014

s g o l B , es t i s b a e i d W e M al i c o S &

love

Quirky Cooking quirkycooking.blogspot.com.au Allergy friendly wholefood recipes to delight and inspire.

Epilepsy Australia epilepsyaustralia.net.au Pop along to this site to download your Seizure First Aid poster.

A Very Special Needs Resource facebook.com/AVerySpecialNeedsResource Lots of inspirational quotes and articles.

Resources for Special Needs Australia facebook.com/groups/ resourcesforspecialneedsaustralia This is a closed group that provides support for parents, carers and professionals of children with special needs.

The Life Unexpected thelifeunexpected.com Accepting the diagnosis is one thing, accepting the life it will bring is something completely different. ... and much more important â&#x20AC;&#x201C; Marianne Russo

September 2014

Recipe corner

Part alchemy, part magic, these two recipes are less cooking, more science experiment and amazingly turn into something quite delicious. I love to cook and like to participate in the ‘food as medicine’ way of life but I am also very time poor, so I was super keen to give these a go. The only hard part is having the patience to wait 24 hours to see if they’ve worked!

Heidi’s Coconut Yoghurt Ingredients 2 cans coconut cream tsp Inner Health Plus powder (use the non-dairy one to 3 keep this a dairy-free yoghurt). You could also use two small tablespoons of coconut yoghurt as the starter. 1 sterilised glass jar (big enough to house the yoghurt)

If you’d like it a little thinner, mix in the coconut water you reserved earlier. Refrigerate, or the yoghurt will continue to develop. The longer it develops, the tangier it’ll be. If you want extra tips, tricks, troubleshooting and reasons why coconut yoghurt’s so good for you, go to Heidi Hosking’s blog www.iraisemykids.wordpress.com.

Strawberry Jam

1 working oven light

Ingredients

Method: Put the cans of coconut cream into the fridge for a couple of hours. The coconut water and cream will separate (with the cream on top).

2 cups strawberries 2 tbsp honey 2 tbsp chia seeds

ut the cream into the glass jar. (If the consistency is too thick, P mix in some of the coconut water from the bottom of the can and reserve the remaining liquid for later). Mix through the Inner Health Plus. ut the jar into the oven with just the oven light on. Wait P for 24 hours. The light provides enough warmth to keep a constant temperature in your oven and your cream will turn into yoghurt.

Method: Process ingredients together and pop into a sterilised jam jar. Pop into the fridge and wait for 24 hours. The chia seeds gel and thicken the fruit puree leaving you with a light, fresh and delicious jam. Now that you have your delicious, homemade coconut yoghurt and processed-sugar free strawberry jam, why not pop both into a bowl with a sprinkling of nuts and seeds for a virtuous and tasty breakfast (or dessert).

Therapies for Kids

Paediatric Physiotherapy, Occupational Therapy, Speech Pathology and Podiatry Specialists in therapy for children with Cerebral Palsy with intensive therapy available on request. We have a holistic approach to all treatments resulting in multi-faceted and integrated outcomes. Contact us anytime to discuss your requirements or concerns. Telephone +61 2 9519 0966

www.therapiesforkids.com.au

September 2014

Cerebral Palsy

The Journey

Begins WORDS | Debbie Evans

What is it? Cerebral Palsy is a blanket term to describe a physical disability that causes a loss or impairment of motor function. It is caused by damage to the developing brain and may be present before or after birth. It effects body movement, muscle control, coordination, posture and balance. The effects of this movement disorder can impact on fine, gross and oral motor skills. It is the most common physical disability affecting children, occurring once in 500 births. Every case of Cerebral Palsy is unique and this is partly due to the type of injury and timing of injury to the developing brain. Cerebral Palsy is characterised in three ways: type, area of body and severity of condition.

Type There are four main types of Cerebral Palsy:

Spastic – spasticity is the most common form of Cerebral Palsy and is a form of hypertonia. Muscle tone is increased causing children to have difficulties controlling individual muscles to perform motor tasks. Dyskinetic – children with dyskinetic Cerebral Palsy have variable movements and muscle tone.

Ataxic Cerebral Palsy – This is the least common form of Cerebral Palsy. Movement will appear clumsy, unstable and imprecise.

Mixed Cerebral Palsy – Many children with Cerebral Palsy have a combination of the above classifications dependent on the area of the body.

Area of body affected

Quadriplegia – all four limbs are affected to some degree.

Diplegia – both legs are affected and there may be minimal involvement of arms – often dyskinetic.

Hemiplegia (most common) – one side of the body is affected. Severity of function – Gross Motor Function Classification Scale This is a five-level system that corresponds to the extent of ability and to impairment limitation. It is a universal classification system. • GMFCS 1 – walks without limitation. • GMFCS 2 – walks with limitations. • GMFCS 3 – walks with adaptive equipment. • GMFCS 4 – self-mobility with powered wheelchair. • GMFCS 5 – extensive use of assistive technology, transported in manual wheelchair.

Who can assist my child? Although the brain injury that causes Cerebral Palsy cannot be healed, the motor impairment can be managed using a wide range of treatments and therapies. As Cerebral Palsy is unique for each child it is important that each child is assessed independently. Therapy and adaptive equipment are primary treatments but a child may also benefit from doing therapy and/or surgical intervention. The overriding principles of therapy are to: • Optimise mobility. • Maximise independence. • Enhance social and peer interactions. • Foster self-care. • Maximise ability to communicate. • Prevent and manage associated conditions. A physiotherapist is often the first therapist a family will see and being able to access a therapist who can assist you to formulate achievable goals for your child while integrating therapy into your daily life is of utmost importance. Your therapist should provide positive reinforcement for your child by focusing on their capability not limitations, and identify alternate methods of completing tasks. It is of the utmost importance that children receive therapy in a safe and supportive environment that promotes inclusion and fun.

What can I do? • Assemble a care team. • Find a paediatrician/rehabilitation specialist. • Assemble an allied health team including orthotists, occupational therapists etc. • Determine set goals on a regular basis always working towards maximum independence, these will coincide with child’s developmental needs. • Create, implement and monitor a coordinated, comprehensive medical plan – do this with your paediatrician/rehab specialist and main therapist. • Maintain your own medical records. The advantage of this is you can evaluate programs, update treatment goals and share with new team members. • Build skill development into your child’s day. • Celebrate any new skill no matter how it may be performed. While searching for the answers to all your questions it is important to remember to enjoy your child and the journey you are on. Debbie Evans is a Physiotherapist at Therapies for Kids with over 35 years experience working with children with movement disorders such as Cerebral Palsy. She has extensive experience working with parents, educators and other clinicians to achieve optimal outcomes for all children and parents. www.therapiesforkids.com.au

September 2014

What it feels like to grow up with a disability… WORDS | Natalie Corrigan

How do I begin to describe what it’s like to live in a body that’s so foreign to normal? At my request, Mum pulls out the old blue suitcase. It’s swimming with old photographs and other documents my parents have held onto over the years. My mum reminds me finding any photos of me is difficult, “You hated having your picture taken”. There’s evidence of that at least. Photos from infancy to preschool are easy enough to find but sometime after that, pieces of my childhood seem absent. The photos that do exist show a thin child with awkward posture and bony, scissored knees. In these pictures my Cerebral Palsy is more visible, perhaps so is my unhappiness with it. I first became aware my body was different at five-years-old, when I was fitted with my first pair of Ankle Foot Orthotics (AFO’s). The emotions that accompanied this awareness were confusion and frustration. These feelings would chase me all the way up to high school, and were soon followed by feelings like shame and anger. My parents did their best to give me an upbringing no different from my four older sisters. At the same time, they never ignored the fact that I had a disability and that it came with physical limitations. As a culture, we seem to be more and more reluctant to acknowledge the limitations that do come with being disabled. More concerning, we seem hesitant to even say the word disability. This has become taboo, but it shouldn’t be. The greatest thing my parents ever equipped me with was knowledge. In particular, knowledge of my own body. Walking through the school playground was an emotional minefield. My gait was accompanied by peculiar looks, taunts and a wide array of unwanted imitations.

Because my parents had sat me down and explained my own body to me, I was able to deal with bullies by simply replying “Yes, I walk funny because I have a disability”. If you try to avoid labelling your child’s condition, or worse, avoid it altogether, your child will only feel more disadvantaged. Furthermore, it may send the message that you are uncomfortable with your child’s condition. Living in a disabled body can leave a child feeling vulnerable but giving them insight can be very empowering. Understanding the how and why of their own body, returns some sense of control over it. Growing up, I was chided by my teachers and peers whenever I said “I can’t”. The reality was sometimes I genuinely couldn’t do certain things. By all means uncover your child’s strengths and nurture them but don’t put unnecessary pressure on them. Doing this will exacerbate the guilt and shame they may already feel about their physical state. Speaking from personal experience, where I struggled in gym class I thrived academically. My parents encouraged this asset and it has served me well. The biggest disaster I was exposed to as a disabled child was being cast in the ‘inspiration role’. This should be an absolute no-no for all parents and caregivers. People with disabilities were not born just to inspire the rest of us. Remember, the child is already living in a body they neither wanted nor deserved. This is difficult enough, without being expected to triumph every obstacle. For a parent this might mean accepting the fact that your child will not be a star athlete or ride their bike around the neighbourhood. But with love and patience, that child will find their place.

September 2014

What’s on? September 1-7

Spina Bifida Awareness Week www.sbfv.org.au/upcoming-events

Week Without Words

St Lucy’s School in New South Wales is supporting children who struggle to speak with their Week Without Words.

www.weekwithoutwords.org.au

National Asthma Awareness Week

www.asthmaaustralia.org.au

Peregian Beach Food and Fashion Fiesta, Sunshine Coast The Lions Club of Peregian are hosting this fun filled event of food and fashion.

www.peregianbeachfoodandfashion.net.au

The Canberra Times Fun Run, Canberra

Run for yourself or run for your charity and take in the sights of Canberra with 5km, 10km or 14km courses

www.canberratimesfunrun.com.au

SIDS Stampede

The SIDS Stampede is a fun run and walk event in the beautiful Hawkesbury area with a 5km walk and 5km, 10km and half marathon events.

www.sidsstampede.com.au

Sunday Mail Bridge to Brisbane

One of the biggest fun run events in Australia with 5km and 10km events.

www.bridgetobrisbane.com.au

World Physiotherapy Day www.physiotherapy.asn.au

8-14

Eczema Awareness Week www.eczema.org.au

14-20

www.thecolorrun.com.au

Let’s take steps together to create a future without T1D. Join over 30,000 people around Australia raising funds for research.

www.jdrf.org.au

World Cerebral Palsy Day A global innovation project to change the world for people living with Cerebral Palsy and their families.

en.worldcpday.org

3-5

offroad.lifecyclewa.com

www.gmdaw.org

Big Change for Little Champions A telethon fundraiser with the NRL Footy Show for the Starlight Foundation.

www.changeforlittlechampions.com.au

19-20

The Brismazing Race, Brisbane The ‘Amazing Race’ of Brisbane! Supporting Hear and Say, an early intervention service for children who are deaf/hearing impaired and their families.

www.everydayhero.com.au/event/ brismazingrace2014

Ronald McDonald House Canberra Challenge Hit the road to help their house with a 5 and 10 kilometre walk and run.

www.rmhc.org.au/canberra-challenge

Sunday Mail City to Bay, Adelaide A fun run in the heart of Adelaide with 3km, 6km and 12km distances.

Blackmores Sydney Running Festival

The happiest 5km on the planet, it is a unique paint race that celebrates healthiness, happiness and individuality.

JDRF Walk to Cure Diabetes

Life Cycle for Canteen (Off Road), Western Australia

21 Sunday 14 September – Adelaide Sunday 28 September – Townsville Sunday 12 October – Sunshine Coast Sunday 2 November – Perth Sunday 16 November – Melbourne Sunday 30 November – Gold Coast

various dates across Australia

Global Mitochondrial Awareness Week

www.city-bay.org.au

The Colour Run

October

One of Australia’s most scenic runs through the city of Sydney with a family fun run, bridge run, half marathon and marathon.

This 3 day ride on the Munda Biddi Trail aims to complete a different section of the trail each year so participants can complete the entire trail over a number of years.

Raising Our Wings Gala Ball, Tasmania A night of fun and entertainment to raise awareness and money for Angelman Syndrome.

www.take-flight.org

World Sight Day www.vision2020australia.org.au/events/worldsight-day

9-11

Live for Kids Cycle Challenge, Newcastle A physically demanding 3-day ride travelling over 450km from the Coffs Harbour to Newcastle to support the John Hunter Children’s Hospital.

www.liveforkids.com.au/cycle-challenge

Kick for Kids The Starlight Children’s Foundation will be holding their 3rd annual Kick for Kids soccer event in Wentworth Park, Glebe.

www.starlightfundraising.org.au/event/kick4kids

Medibank Melbourne Marathon Festival

www.sydneyrunningfestival.com.au

One of Australia’s premier running events with a 3km, 5km 10km, half marathon and marathon to choose from.

www.melbournemarathon.com.au

RIDE4MD, Queensland A 100km cycle from Redcliffe supporting Muscular Dystrophy Queensland

www.everydayhero.com.au/event/ride4md2014

12-18

National Nutrition Week www.nutritionaustralia.org

September 2014

12-18

Carers Week 2014

www.carersaustralia.com.au

17-25

Great Endeavour Rally

November Prematurity Awareness Month www.prembaby.org.au

Raising dust and dollars from Western Sydney to Dubbo via the Flinders Ranges, this event raises funds for the Endeavour Foundation creating opportunities for people with a disability.

2-7

www.variety.org.au/NSW/Events/NewcastleEvents/Variety-Postie-Bike-Dash

www.great.endeavour.com.au

Loud Shirt Day, Australia wide

Get loud for a good cause and help raise funds for deaf children, by stepping into your most colourful outfit.

www.loudshirtday.com.au

Race for the Kids, Sydney

Skip, jog or walk the 5km course around Centennial Park and raise money for the Starlight Children’s Foundation.

www.rbcraceforthekids.com.au

The Variety Postie Dash, NSW A fundraising motorcycling event where the only type of motorcycle allowed in a standard Honda Postie Bike, supporting Variety the children’s charity.

6-9

Variety ‘Ride the Vines’ Bike Run, Perth A fun-filled, four day motorcycle mystery tour, riding the vines from Swan Valley to Margaret River.

www.variety.org.au/WA/Events/Bike-Run

Cystic Fibrosis Nurses Education Day, Sydney

Choose from the 400m or 6.4km run/walk from Aurora Stadium in Launceston Tasmania to raise money for Make a Wish.

www.everydayhero.com.au/event/ cysticfibrosisnurseseducationday

Run for a Wish, Launceston Tasmania

www.runforawish.com.au

The Bloody Long Walk Sunday 19 October – Sydney Sunday 26 October – Brisbane Sunday 9 November – Melbourne Enjoy the sights and take on the 35km walking challenge to help cure Mitochondrial Disease

www.bloodylongwalk.com.au

18-26

National Children’s Week www.childrensweek.org.au

An education day for nurses working with children and adults with Cystic Fibrosis at the Children’s Hospital at Westmead.

City 2 Sea, Melbourne The 14km course runs from the Melbourne CBD to St Kilda. There is a 5km event also held.

www.thecity2sea.com.au

Kids Fun Run with Thomas, Emerald A great day of fun runs and train rides from Gembrook Station ran by the Rotary Club of Emerald to raise money for children with Cerebral Palsy and similar conditions.

www.everydayhero.com.au/event/KFRWT2014

Spring Cycle, Sydney

Sydney’s largest recreational bike riding event, join over 10,000 people enjoy this event and support TAD Disability Services Freedom Wheels.

www.springcycle.com.au

24-28

Massive Murray Paddle, Victoria One of the world’s longest paddling races covering a distance of 404km over five days.

www.massivemurraypaddle.org.au

Take part in this urban adventure challenge and experience the thrill and excitement of an Amazing Race in Melbourne. All while supporting the Royal Children’s Hospital Foundation.

A specially adapted performance suitable for people on the autism spectrum and their families.

Great Amazing Race, Melbourne

www.greatamazingrace.com.au

Lion King – Autism friendly performance, Brisbane www.disney.com.au/ lionkingautismfriendly/about

Walk With Me 2014 There will be 20 Dick Smith Walk With Me events across Australia in August and September to raise money for disability services.

August Sun 31 Adelaide Brisbane Rocky Bay

September Sat 6

Sunshine Coast Launceston

Sun 7

Melbourne

Thu 11

Tamworth, New England

Fri 12

Western Sydney Parramatta Riverina Townsville

Sat 13 Hobart

Sun 14

Cairns Mackay Mount Isa Rockhampton

Wed 24 Western NSW Newcastle

Sat 27 Hunter

Find out all the details at www.walkwithme.org.au

September 2014

Directory Aids and Equipment Abilitations

PO Box 210 Forster NSW • Ph 02 6555 9877 • abilitations.com.au • Email debbie@lifeskills4kids.com.au or Nicola@lifeskills4kids.com.au

Achievable Concepts

5 Collins Close Caves Beach NSW • Ph 0490 517 960 • achievableconcepts.com.au • Email sales@achievableconepts.com.au

Calming Kids

4 Burgess Street Hamersley WA • Ph 0439 958 048 • calmingkids.com.au • Email info@calmingkids.com.au

DoAbility Kids

53 Stubbs Street Kensington VIC • Ph 1300 122 355 • doabilitykids.com.au • Email deb@doabilitykids.com.au

Korthotics

5/10 George Street Leichhardt NSW • Ph 02 9569 3672 • korthotics.com.au • Email enquiries@korthotics.com.au

Medifab

26 Pardoe Street East Devonport TAS • Ph 1300 543 343 • medifab.com.au • Email solutions@medifab.com

Milestones Therapy

PO Box 1387 Macquarie Centre PO NSW • Ph 0434 853 245 • milestonestherapy.com.au

ProOptics

Health and Nutrition Bellamy’s Organic

52-54 Tamar Street Launceston TAS • Ph 1800 010 460 • bellamysorganic.com.au • Email info@bellamysorganic.com.au

Dr Salt

18/427 Hampton Street Hampton VIC • Ph 03 9598 8805 • drsalt.com.au • Email reception@drsalt.com.au

Sinchies Reusable Food Pouches Currimundi QLD • Ph 0424 351 545 • www.sinchies.com.au

Support Services Angelman Syndrome Association

PO Box 554 Sutherland NSW • Ph 02 8521 7463 • angelmansyndrome.org • Email president@angelmansyndrome.org

ARC Disability Services

Inc 92 Little Street Manunda QLD • Ph 07 4046 3600 • arcinc.org.au • Email info@arcinc.org.au

Association of Genetic Support Australasia 66 Albion Street Surry Hills NSW • Ph 02 9211 1462 • agsa-geneticsupport.org.au • Email info@agsa-geneticsupport.org.au

Australian Kabuki Syndrome Association 13 Lockwood Road Erindale SA • kabukisyndromeassoc.com.au • Email david.ellis@police.vic.gov.au

7 George Street Sydenham NSW • Ph 02 8007 6041 • prooptics.com.au • Email jacque@prooptics.com.au

Australian Leukodystrophy Support Group

Special Needs Solutions

Australian Mitochondrial Disease Foundation

12 Everest Drive Southport QLD • Ph 07 5527 9794 • specialneedssolutions.com.au • Email info@specialneedssolutions.com.au

Springfree Trampoline

PO Box 819 Buderim QLD • Ph 1800 586 772 • springfreetrampoline.com.au • Email info@springfreetrampoline.com.au

Clothing Little Big Feet

6/2069 Moggill Road Kenmore QLD • Ph 07 3378 5935 • littlebigfeet.com.au • Email info@littlebigfeet.com.au

Little Toggs

10 Selina Place Glenwood NSW • Ph 0426 972 914 • ittletoggs.com.au • Email info@littletoggs.com.au

Wonsie Bodysuits

Sydney NSW • Ph 0409 309 129 • wonsie.com.au • Email info@wonsie.com.au

PO Box 2550 Mount Waverley VIC • Ph 1800 141 400 • alds.org.au mail@alds.org.au

Cerebral Palsy League

55 Oxlade Drive New Farm QLD • Ph 1800 272 753 • cpl.org.au • Email info@cpl.org.au

CHARGE Syndrome

PO Box 91 Glenfield NSW • Ph 02 9605 8475 • chargesyndrome.org.au • Email contact@chargesyndrome.org.au

Cornelia De Lange Syndrome Association (Australasia) Inc PO Box 20 Putney NSW • Ph 02 9809 0287 • cdlsaus.org

Cri Du Chat Support Group of Australia 104 Yarralumla Drive Langwarrin • Ph 03 9775 9962 • criduchat.asn.au

Deaf Australia

PO Box 1083 Stafford QLD • Ph 07 3357 8277 www.deafau.org.au • Email info@deafau.org.au

Deaf Children Australia

PO Box 6466 St Kilda Road Central VIC • Ph 1800 645 916 • deafchildrenaustralia.org.au • Email helpline@deafchildren.org.au

Down Syndrome Australia

219 Napier Street Fitzroy VIC • Ph 1300 658 873 • downsyndrome.org.au • Email info@downsyndrome.org.au

Epilepsy Australia

20 Charrington Court Baulkham Hills NSW • Ph 1300 852 853 • www.epilepsyaustralia.net

Foundation for Angelman Syndrome Therapeutics Australia PO Box 248 Salisbury QLD • Ph 1300 078 108 • cureangelman.org.au • Email info@cureangelman.org.au

Learning Difficulties Coalition PO Box 140 Westmead NSW • Ph 02 9806 9960 • www.ldc.org.au

Suite 4, Level 69, 13 Young Street Sydney NSW • Ph 1300 977 180 • amdf.org.au • Email info@amdf.org.au

Lifeline

Autism Awareness Australia

Lions Club Australia

PO Box 288 Seaforth NSW • Ph 02 9904 8700 • autismawareness.com.au • Email office@autismawareness.com.au

Autism Spectrum Australia (ASPECT) • Ph 1800 277 328 • autismspectrum.org.au

Beyond Blue

PO Box 6100 Hawthorn West VIC • Ph 1300 224 636 • beyondblue.org.au

CARA

98 Woodville Road Woodville SA • Ph 08 8347 4588 • cara.org.au • Email help@cara.org.au

Cerebral Palsy Australia

Level 39, 259 George Street Sydney NSW • Ph 02 8259 7725 • cpaustralia.com.au • Email contact@cerebralpalsyaustralia.com.au

PO Box 173 Deakin ACT • Ph 13 11 14 • lifeline.org.au 31–33 Denison Street Newcastle West NSW • Ph 02 4940 8033 • www.lionsclub.com.au

Mamre Association Inc

40 Finsbury Street Newmarket QLD • Ph 13 11 14 07 3622 1222 • mamre.org.au • Email mamre@mamre.org.au

Prader-Willi Syndrome Association VIC • Ph 0451 797 284 • pws.asn.au • Email info@pws.asn.au

Rare Voices Australia Ltd

Suite 2, 3 The Postern Castlecrag NSW • Ph 02 9967 5884 • rarevoices.org.au • Email admin@rarevoices.com.au

Rett Syndrome

PO Box 855 West Perth WA • Ph 08 9489 7790 • Email aussierett@ichr.uwa.edu.au

September 2014

SAKKS – Supporting Aussie Kids with Kabuki Syndrome PO Box 318 Rundle Mall SA • Ph 0422 608 858 • sakks.org • Email petal@sakks.org

Spina Bifida Foundation Victoria

Level 4, Ross House, 247 Flinders Lane Melbourne VIC • Ph 03 9663 0075 • sbfv.org.au • Email info@sbfv.org.au

Steve Waugh Foundation

Level 11, 17 York Street Sydney NSW • Ph 1300 669 935 • stevewaughfoundation.com.au • Email info@stevewaughfoundation.com.au

Syndromes Without A Name (SWAN) Australia

PO Box 390 Fairfield 0404 280 441 • swanaus.com.au • Email info@swanaus.com.au

The Fragile X Association of Australia Suite 6, Level 3, 39 East Esplanade Manly NSW • Ph 1300 394 636 • fragilex.org.au • Email support@fragilex.org.au

The Shepherd Centre

146 Burren Street Newtown NSW • Ph 02 9370 4400 • sherherdcentre.org.au • Email enquiries@shepherdcentre.org.au

Vision Australia

• Ph 1300 847 466 • visionaustralia.org • Email info@visionaustralia.org

Williams Syndrome Association of SA 83A Ridgway Drive Flagstaff Hill SA • Ph 08 7329 5409 • wsasa.org.au • Email wsaofsa@adam.com.au

Young People in Nursing Homes National Alliance 207 City Road Southbank VIC • Ph 0437 178 078 • www.ypinh.org.au

THERAPY PROVIDERS Ability First Australia

Level 39, 259 George Street Sydney NSW • Ph 1800 771 663 • abilityfirstaustralia.org.au • Email info@abilityfirstaustralia.org.au

AEIOU N70

Recreation Road Nathan QLD • Ph 07 3320 7500 • aeiou.org.au • Email info@aeiou.org.au

All About Kids Counselling and Psychology

Shop 2, 33 Lisson Grove Wooloowin QLD 07 • Ph 3262 6009 • www.allaboutkids.com.au

Clifton Hill Physiotherapy

Everyday Independence

Small Talk Speech Therapy

Happy Dots

Speech Pathology Tasmania

In Sync Kids Occupational Therapy

Speech Teach

Body Organics 6 Ambleside Street West End QLD • Ph0481 121 844 • www.insynckidsot.com

Splash Occupational Therapy

PO Box 274 Carlton South VIC • Ph 1300 179 131 • everydayind.com.au • Email info@everydayind.com.au 5/58 Victory Parade Toronto NSW • Ph 02 4959 8920 • happydots.com.au • Email rachelle@happydots.com.au

Kids Matters OT

2/747 Fairfield Road Yeerongpilly QLD • Ph 1300 136 596 www.kidsmatters.com.au • Email admin@kidsmatters.com.au

Kids OT

Suite 13, Level 1, Forestway Shopping Centre Frenchs Forest NSW • Ph 02 9451 5735 • kidsot.com.au

KidsRISE

Level 1/490 High Street Northcote VIC • Ph 0419 133 895 • kidsrise.com.au • Email mirandavanstyn@kidsrise.com.au

Montrose Access Inc

54 Consort Street Corinda QLD • Ph 07 3379 9200 • montroseaccess.org.au • Email information@montroseaccess.org.au

7/98 Barkly Street St Kilds VIC • Ph 0406 602 449 • cosmoschild.com • Email nicolaross21@gmail.com

Sprout Paediatric Therapy Services

352 Main Street Mornington VIC • Ph 03 5975 9197 • sprouttherapyservices.com.au • Email sprout@sprouttherapyservices.com.au

St Giles

65 Amy Road Launceston TAS • Ph 03 6345 7333 • stgiles.org.au • Email society@stgiles.org.au

The Therapy Place

508 Canterbury Road Vermont VIC • Ph 0421 127 628 • thetherapyplace.com.au • Email fiona@thetherapyplace.com.au

Movement Solutions

TLC Psychology P/L

Northcott Disability Services

Wattletree Centre

1 Fennell Street North Parramatta NSW • Ph 02 9890 0100 • northcott.com.au • Email northcott@northcott.com.au

Novita Children’s Services

Days Road Regency Park SA • Ph 08 8243 8243 • novita.org.au • Email enquiries@novita.org.au

OCC Therapy

PO Box 118 Kenmore QLD • Ph 07 3378 9543 • occtherapy.com.au • Email fiona.jones@occtherapy.com.au

Occupational Therapy Helping Children 22 Marinna Road Elanora Heights NSW • Ph 02 9913 3823 • occupationaltherapy.com.au • Email mail@occupationaltherapy.com.au

Optimum Movement

11/116 Wellington Street Ormiston QLD • Ph 07 3821 3399 • Email admin@optimummovement.com

Paediatric Physiotherapy Centre

Rocky Bay Inc

Cosmos Child

Wyndham Private Medical Centre, Level 1, Allied Health Wing, 242 Hoppers Lane Werribee VIC • Ph 03 8731 6555 • splashtherapy.com.au • Email info@splashtherapy.com.au

37 Nelson Street Annandale NSW • Ph 02 9519 0966 • therapiesforkids.com.au • Email enquiries@therapiesforkids.com.au

Colour Kids

20 Keane Street Currajong QLD • Ph 07 4759 2000 • cootharinga.org.au • Email CSNQ@cootharinga.org.au

•Ph 07 3324 1114 • www.speechteach.com.au

603-605 Nicholson Street Carlton North VIC • Ph 03 9387 1734 • www.melbourneot.com

Kells House, 87 Buckley Street Moonee Ponds VIC • Ph 03 9917 2884 • paediatricphysiotherapycentre.com • Email m.xenitelis@bigpond.com

Cootharinga North Queensland

110 Elizabeth Street Hobart TAS • Ph 03 6234 5717• spt.com.au • Email speech@spt.com.au

Therapies for Kids

111 Queens Parade Clifton Hill VIC • Ph 03 9486 1918 • cliftonhillphysiotherapy.com.au • Email sallie@cliftonhillphysiotherapy.com.au PO Box 611 Riverstone NSW • Ph 0403 822 255 • colourkids.com.au • Email tina@colourkids.com.au

22 Brunker Rd Broadmeadow NSW •Ph 1300 651 704 • www.smalltalkspeechtherapy. com.au

M.O.T.A. Melbourne Occupational Therapy Associates

1/26 Eva Street Coorparoo QLD • Ph 07 3324 2490 • movementsolutions.com.au • Email reception@movementsolutions.com.au

60 McCabe Street Mossman Park WA • Ph 08 9383 5111 • rockybay.org.au • Email admin@rockybay.org.au

Scope Victoria

830 Whitehorse Road Box Hill VIC • Ph 03 9843 3000 • scopevic.org.au • Email crc@scopevic.org.au

Sense Ability

Unit 1/14 Clare Mace Crescent Berkeley Vale • Ph 02 4389 1812 • senseability.com.au • Email admin@senseability.com.au

Australia wide • Ph 0410 788 844 • tlcpsychology.com.au • Email info@tlcpsychology.com.au 99 Wattletree Road Armadale VIC • Ph 03 9500 2844 • www.wattletreecentre.com.au

Toys and Resources ARC Toy and Library Resource Centre 92 Little Street Manunda QLD • Ph 07 4046 3600 • arcinc.org.au • Email info@arcinc.org.au

Life Skills 4 Kids

PO Box 210 Forster NSW • Ph 02 6555 9877 • abilitations.com.au • Email debbie@lifeskills4kids.com.au or Nicola@lifeskills4kids.com.au

My Diffability

PO Box 302 Moonee Ponds VIC • Ph 03 8456 6613 • mydiffability.com.au • Email diffabilityaustralia@gmail.com

SenseAbilities

PO Box 445 Montrose • Ph 03 9726 8047 • senseabilities.com.au • Email kathy@senseabilities.com.au

Special Needs 4 Special Needs

12 Stockridge Place Morayfield QLD • Ph 07 5428 7126 • specialneeds4specialneeds.com.au • Email fiona@specialneeds4specialneeds.com.au

Windmill Educational Toys and Equipment 265 Charles Street Launceston TAS • Ph 1800 333 634 • windmill.net.au • Email launceston@windmill.net.au

Zooba

34 Twin Peaks Road Bli Bli QLD • Ph 0410 620 240 • www.zooba.net.au

September 2014

e v o l Apps Write My Name $3.99 iOS 4.3 or later/iPad

Write My Name is for children with special needs to help them practice emerging writing skills in a fun and playful way. Children with name writing as one of their IEP (Individual Education Program) goals will especially benefit from the Write My Name learning application as it makes this task accessible and achievable to children with fine motor delays and sensory processing issues.

Social Skill Builder Lite By Social Skill Builder, Inc $2.99 iPad/iPod

All of the Social Skill Builder app modules use interactive video to teach key social thinking, language and behaviour critical to everyday social situations. This award winning software assists in the understanding and growth of social skills in the areas of: •Friendship/life skills •Understanding emotions •Problem solving •Critical thinking •Perspective taking This type of interactive engagement produces a higher level of understanding and retention than passively watching video stories. Social Skill Builder products are all designed by speechlanguage pathologists with an understanding of how to promote social learning successfully in individuals with such learning challenges as: • Autism Spectrum Disorder • Asperger Syndrome • Traumatic Brain Injury • Down Syndrome • Attentive Deficit Disorder • Other learning and language deficits

Fruit Memory Match Game By Bloom Built, LLC Free iPad/iPod

A beautifully designed memory match card game for 1-4 players

Injini: Child Development Game Suite By NCSOFT $29.99 iOS 4.3 or later/iPad

Winner of the Editor’s Choice Award for Excellence in Design from Children’s Technology Review. “This is one of the most thought-out and comprehensive apps that we have seen.” – Technology in (Spl) Education. “Whether you are working with children with disabilities or want to help your young child develop in a fun yet challenging manner, I strongly recommend Injini.” – David Boniske, Occupational Therapist, Albany Unified School District. Inspired by children with special needs, Injini’s game developers worked for two years with parents, early childhood educators, and occupational, speech, and cognitive experts to create superior play-based learning experiences that help young children reach developmental milestones. The games were designed for and tested with children with Autism, Cerebral Palsy, Down Syndrome and various developmental delays, as well as typically developing preschoolers – they love it too!

Tap To Talk

Free (for basic/trial version) Android Give a non-verbal child or adult a voice! TapToTalk turns an Android Phone or Tablet into an augmentative and alternative communication (AAC) device. TapToTalk makes communication fun, like another “game” on this cool device. Just tap a picture and TapToTalk speaks. Each picture can lead to another screen of pictures.

Touch and Go – Visual Countdown Timer $0.99 Android

A Visual Countdown Timer. This app is aimed at kids who benefit from visual reinforcers, particularly kids who are non-verbal, ASD or kids who just plain do better with visual feedback. The app allows you to set various timers (in seconds), the corresponding text to display and the image to display during the countdown. In addition you can set it to play a sound when the countdown is up.

Book review Lessons from my Child:

Parents’ experiences of life with a disabled child Written by: Cindy Dowling, an Australian freelance journalist and the mother of an autistic child.

Neil Nicoll, a psychologist in private practice in Sydney, specialises in developmental disorders such as Autism Spectrum Disorder.

Bernadette Thomas, a publisher and an advocate for people with an intellectual disability, has a son with Down syndrome. Published by: Exisle Publishing, 2004

Children with Seizures: A guide for parents, teachers, and other professionals Written by: Martin L. Kutscher, M.D Published by: JKP Essentials, 2006 Martin L. Kutscher, M.D. is board-certified in Paediatrics and in Neurology, with Special Competency in Child Neurology. He is currently an Assistant Clinical Professor of Pediatrics and Neurology at the New York Medical College. He is author of the website www.SyndromeMix.com. This concise, accessible handbook for families, friends and carers of children with seizures provides all the information they need to approach seizures from a position of strength. Part 1 discusses types and causes of seizures, and what to do during a seizure. The medical concepts and technical terminology, as well as the available tests and treatments, including anticonvulsant medication, are clearly explained. The author also addresses some of the emotional and social issues that may arise, and there are chapters for kids and teens to read themselves or with their parents. Part 2 covers some of the most common Epilepsy syndromes in more detail. Further reading and useful contacts are also provided. This reassuring, informal, and upbeat book will reinforce and help clarify the discussion with the child’s treating medical professional. WIN your own copy of Children with Seizures, enter online at www.sourcekids.com.au/

Every expectant parent dreams of having a healthy, ‘perfect’ baby. But for some, those expectations are shattered forever with the arrival of a disabled child. Long-cherished hopes must now be set aside as these parents begin to deal with a new, unwelcome reality and take the first tentative steps on a long and challenging life journey. Lessons from my Child is a collection of stories gathered from parents of special-needs children from around the world. In their own words, these parents speak openly and honestly about raising a child with intellectual or physical disabilities – the sleepless nights, the long periods of sadness, the tiny triumphs and the ongoing battle to ensure that their child assumes his or her rightful place in the world. The stories are grouped into chapters that reflect the main stages of many parents’ journeys as they move from grief, denial and anger to a point where they can accept their situation, and perhaps see their child’s disability as embodying a profound life lesson. Each chapter begins with an expert psychological commentary on what parents may be experiencing at that stage. These accounts from parents allow rare insights into the challenges of their world and reveal the extraordinary rollercoaster of emotions many face daily. What emerges is a testament to human determination and a powerful reaffirmation of the strength of love. Lessons from my Child is a must-read book for anyone who knows and loves someone with special needs – but, more importantly, for the people that make up the communities our special families live in. It will give comfort to those who live with and love a child with a disability as it documents and exposes the range of highs and lows that is part of the journey. It tells it as it is, with love, humour and a refreshing honesty. Judy Brewer Fischer, Founder Autism Aspergers Advocacy Australia (A4), Chair, National Family Carers Voice. WIN your own copy of Lessons from my Child, enter online at www.sourcekids.com.au/competitions

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.