Issue 1 April 2014Free Issue 3 – December 2014

Make the most of this summerAll about nutrition including recipes from Pete Evans

Christmas survival

guide and gift ideas

Taking a holiday with your special

needs child

managing siblings

fragile X syndrome explained

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December 2014 1

CONTENTS

Get all of the latest information and updates from Source Kids

3 International Day of People with Disability

8 Advocating for your child in a medical minefield

10 Overland Jack

14 All about nutrition

Making health work for your kids

Helping children to eat

A word about nutrition

Recipes by Pete Evans

20 Fragile X Syndrome

22 Medical Marijuana

24 Fun in the sun

26 The benefits of outdoor play areas

28 Taking a holiday with your special needs child

34 Kids go swimming

36 Christmas survival guide

38 Christmas gift ideas

40 Managing siblings

Regulars

2 Welcome

4 Product review – bikes and trikes

23 Product review – safe surrounds bed

42 Family profile – the Merz family

44 What’s on calendar

46 Directory

48 Top 10 tips – taking photos

49 Apps, books, blogs and websites

Features

2 December 2014

Welcome to source KidsAs we embark on our third issue of Source Kids, and as 2014 draws to a close, we are celebrating what a wonderful year it has been for Source Kids! Since we started the magazine and online resource earlier this year, the response has been incredible, in the most positive of ways.

For starters our social media pages went crazy, we received endless emails and messages of support, the demand for the magazine is so great we can’t supply everyone who wants a copy of Source Kids and we’ve just ticked over our third issue for the year – it’s been one action packed year!

There is no understating the time, effort and enthusiasm that goes into producing each issue of Source Kids to make sure we deliver reliable, relevant and up-to-date information. The team including Marie-Louise, Rachel, Angie and Karen, plus a host of contributors have done a fantastic job, as I’m sure our readers will agree.

It’s a sad time as we bid farewell to Angie, who has worked with our advertisers this year to bring you a whole range of products and services you probably knew very little about until hearing about them in Source Kids. Angie is moving on to spend more time with her beautiful son, Sawyer. We’ll miss you Angie!

As the parent of a child with special needs, I tend to dread this time of the year. As the weather warms up and everyone starts to head out and about I always get a little sad as this is the time that having a child with special needs affects me the most.

This is the time of year, I am envious of others as they cruise the streets checking out Christmas lights, prepare their kids for the arrival of Santa, buy endless amounts of Christmas presents and head away for summer holidays!

All of these things are just that little bit more difficult when your child has special needs. Holidays are tricky, it can be hard to find suitable gifts and they don’t always understand what Santa or Christmas is, even heading to the local park or beach can be a monumental occasion.

So this issue, we’ve turned the negatives into positives. The things we dread, we’ve provided guides to make these positive occasions including Making the Most of Summer, Christmas Survival Guide and Gift Ideas, Taking a Holiday with your Special Needs Child, plus All About Nutrition with recipes from Pete Evans and Managing Siblings.

It’s action packed, yet again, so we hope you enjoy our third issue of Source Kids and find loads of information to help you enjoy this festive time of year.

Merry Christmas and happy holidays to our readers and supporters, see you in 2015!

Emma Price Publisher

Emma Price Publisher emma@sourcekids.com.au

Published ByMarketing Co PO Box 5279, Launceston TAS 7250 Phone: 1300 882 370 ABN: 66 434 598 812 Web: www.sourcekids.com.au

Editorial ContributorsMarie-Louise Willis, Rachel Williams, Dr David Coman, Heidi Hosking, Pete Evans, Brooke Gibbon, Julie Jones, Michaela Schelleman and Debbie Hopper

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

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

ThE Team

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

Rachel Williams Editorial editor@sourcekids.com.au

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

Karen Anderson Graphic Design info@sourcekids.com.au

December 2014 3

“In 2013, more than 750 events were registered by businesses, community groups, sporting organisations and schools to support IDPwD.’’ It is quite clear to see how technology is changing the landscape for people with a disability in Australia.

“Seeing the rapid development in technology over the last twenty years, and in particular assistive technology for people with disabilities ... has been a wonderful development. Rapidly developing technology has changed the way people with disability can access entertainment, work, communication and basic information seeking,’’ the spokesman said.

The UN says its theme highlights the way that new technology is helping in ways including:

• Disasterriskreductionandemergencyresponses,involvingpeople with disability in planning and response;

• Creatingenablingworkingenvironments–assistivesupportscan be the difference between can and cannot; and

• Disabilityinclusivesustainabledevelopmentgoals.

The government spokesman says the government continues to work towards improving accessibility for people with a disability by signing the Marrakesh Treaty to facilitate better access to published works for people who are blind, visually impaired, or otherwise print disabled.

“The treaty will give an estimated 285 million people with vision impairments around the world access to more books published in accessible formats including large print, braille or audio,’’ the spokesman said.

“The treaty will allow exceptions to copyright law to enable organisations to produce and distribute books and other materials in formats that are accessible to people with visual impairment. The exceptions will only be used when books in accessible format are unavailable.’’

He said the continued roll out of the National Disability Insurance Scheme will also give more people better access to new technologies.

for 22 years, the world has set aside one day of the year to celebrate the wonderful contribution people

with a disability make to our communities.

international day of People with disability

(idPwd) is held each year on december 3

and this year will be no different.

The United Nations develops a theme each year, and in 2014

the day will focus on the role of technology as a way to break

down barriers for people with disability. It will also highlight how

devices are becoming faster, cheaper and more accessible.

The Australian Government is a big supporter of the day

and the hundreds of events being held around the country –

from inclusion awards and community events to the National

Wheelchair Quidditch Championships and pool parties.

“It is a fantastic opportunity to celebrate and acknowledge

Australians with disability,’’ a government spokesman said.

“It’s also a good time to reflect on the accomplishments of many

people in the community to improve the economic and social

participation of people with disability.

“The day plays an important role in promoting the inclusion

of people with disability in all aspects of Australian life. It also

reminds us what still needs to be done to ensure people with

disability can fully participate in social and economic life.’’

A full events calendar is on the website - idpwd.com.au - and

there are also details of how you can register your own activity.

“I encourage communities and organisations throughout the

country to organise an event celebrating the achievements and

contributions of people with disability in their local area,’’ the

spokesman said.

4 December 2014

2 muScle / ProPriocePTion movemenT

Bike riding is a great resistance exercise, giving good muscle feedback through the arms and legs. This increases body awareness and helps build the neuronal pathways for better co-ordination across other tasks. Through balancing on a bike, our core postural and abdominal muscles are strengthened, which helps us sit for tabletop tasks at preschool and school.

3 viSualBeing outside stimulates our visual system. When sunlight

stimulates the pineal gland it helps regulate our biological clock, assisting in self-regulation and maintaining a good sleep-wake cycle. Natural sunlight also increases our immune system, decreases feelings of depression and makes kids happier.

4 audiToryBike riding encourages children to practise sound

localisation – being aware of other walkers or cars that are constantly changing position around them. These auditory skills are really important to carry into the classroom, being able to tune in to teachers’ instructions as they walk around the room and screen out other non-essential noise.

5 develoPinG coordinaTion and moTor PlanninG SKillS

All of our senses give us full body information that contribute to refining co-ordination skills. Many children struggle with knowing ‘how’ to organise their movements when trying new activities.

Bike riding is a difficult skill to learn, and if your child is finding it difficult to ‘take-off’, here are some ideas to try to make it easier.

Learning to ride a bike is an exciting skill acquisition, and is celebrated alongside other developmental achievements such as saying a first word or taking those first steps. Similar to learning to walk, learning to ride a bike is a very complex skill that requires all our senses to be working efficiently for take-off to be achieved. Children with special needs often find learning to ride a bike extremely difficult, and they often achieve this milestone long after their peers.

Riding a bike is a complex multi-sensory skill, which is one reason why it is so difficult to learn. By breaking down the task and supporting children’s motor needs, we can help children not only with bike riding skills but developmental skills that will carry over and help them in other co-ordination, learning and concentration skills.

Benefits of bike riding for children with special needs

Riding a bike is a great fun activity to encourage kids to be outside. Many children with special needs struggle with co-ordination and movement skills. They find it easier to avoid active movement, often preferring sedentary tasks and screen time.

Here are some of the sensory benefits of riding a bike.

1 movemenT/ veSTibular inPuTOur vestibular systems help us maintain our posture, give

us information about movement and motion, and stabilise eye movements. It is also essential in assisting children to be able to concentrate and focus on tasks. We need to have movement before we are able to concentrate on learning tasks, not afterwards as a reward.

and bikes trikes

Product ReviewProduct Review

December 2014 5

• Practiseonabalancebike(abikewithnopedals).Thiswillgive lots of vestibular/movement information and they will feel safer being able to stop with their feet

• Ridewithyourchildonatag-a-longbikebehindanadult'sbike. They will enjoy going longer distances, and they can practise pedaling without worrying about balancing.

• Trytrainerwheelswhiletheydevelopsittingandbalanceskills.

• Rememberthatitiseasiertobalancewhilethebikeismovingfast. Give yourself a workout – running beside your child with yourhandontheirbacktohelpthembalance(sotheyfeelsafer)willgivequickersuccessthanwalkingbesideachildand assisting.

• Ifatwowheeledbikeistoodifficulttomaster,therearemanyoptionsthesedaysfortricycles(evenforolderchildren)whichare really cool.

Bike riding develops many skills for children, but it is also important for being involved socially with peers and family. It develops self-esteem, and allows outdoor time for creating special memories that will last a life time.

Debbie Hopper is an Occupational Therapist who is passionate about helping children with sensory processing difficulties and making life easier for children, parents and teachers. She provides information and resources at www.lifeskills4kids.com.au and www.abilitations.com.au.

body cycleSAustralian custom made trikes

Body Cycles, in conjunction with Bernie Jones Cycles have been manufacturing trikes since 1990. The range of standard and therapeutic trikes is designed to assist children and adults with or without special needs to achieve freedom, independence and support. All trikes are Australian made from quality new parts. www.bodycyclesaustralia.com.au

The EdgeThe Edge is manufactured by Body Cycles and can be constructed to suit mild to severe disabilities including Autism, Down Syndrome and Cerebral Palsy. Accessories are available to add to the base trike dependent on need, so there is no need to have extra accessories that you do not require. Body Cycles can also add or remove accessories, as the rider’s needs change.

Features

• Adjustablehandlebars• Chainguard• Frontlockinghandbrake• Choiceofsaddles• Australianmadeframe

• Powdercoatedframe• Availablein12",16",20"24"and24"gearedsizes

• Colours–purple,blue, red, green

bikes trikes

Providing a range of standard and therapeuti c trikes for children with mild to severe special needs to help them achieve freedom, independence and support. Tailored to individual needs, Australia-wide.

Ph (08) 8377 0399 • www.bodycyclesaustralia.com.au

6 December 2014

DCP mini/12/16 and AS 2000Find your freedomFrom those with simple balance problems to those more involved cases, these bikes offer the perfect combination of therapy and fun. Really secure, safe bikes that can be tailored to your child’s individual requirements. Special Needs Solutions is the distributor for Freedom Cycles. www.specialneedssolutions.com.au

• Stablethree-wheeldesign

• Adjustablehandlebarsthatcanmovecompletelyoutoftheway for easy unobstructed on/off transfers

•Featuresanadjustableseatinlowbackorhighbackstylescompletewithsafetybelt(s)

•Theuniquecrankandsprocketthatcanbeadjusted in all directions to accommodate different hip to foot positions

•Discreetassistancehandlesotheridercanlearn to ride and stop with a little help

•Independentlyadjustablehandlebarsandtelescopic posts move up, down, or forward to meet the special needs of the riders (notavailablein16”model)

• Directdriveandlowgearratiosthatmakepedallingeasy for a beginner, yet challenging for an aggressive rider

• Velcrostrapstokeepfeetonthepedalsandoptionalsupportingfootplates(adjustableneoprene,ormoulded ABSplastic)

• Lockinghandbrakemechanismsforeasymountinganddismounting

• Quickreleaseboltsonalladjustablecomponents

• Powderbakedpaintensuresdurability,yearsofgoodlooks

• Optionalrearsteeringsystemavailablethatallowsthecaregiver to steer, or brake from the rear of the mobility device – once the rider becomes more comfortable with reciprocal movement, an adjustment can be made allowing the rider to control, or assist with the navigation of the bike

• Optionalquickreleasewheels

• Optionalrearbasketplatform

• iPod/iPadholdersavailable

• Optionalvelcrogloves

• Optionalseven-speedgearingforeasyorchallengingpedalling selection

• Optionalhandpedals

DCP 16

Freedom concePTSDiscovery and Adventurer series

DCP 12

DCP mini

AS 2000

December 2014 7

DSP Mini DCP 12 DCP 16 AS 2000 Edge KMX K-3 KMX Kompact

Length 106.7cm# 109cm# 122cm# 157.5cm# 110cm to 160cm 142cm 147cm

Width 73.6cm 73.6cm 73.6cm 73.6cm 12" and 16" – 65cm 20" and 24" – 70cm

71cm 70cm

Weight 18kg 20kg 20kg 29kg Starting at 15kgs depending on accessories required

15.7kg 18.5kg

Wheel size 12inch 12inch 16inch 20inch 12", 16", 20" and 24" 16" rear mag wheels, 12" front mag wheels

16" front mag wheels and 16" spoked rear wheel (with wheel filler)

Inseam size* 15.24-33cm 25.4-50.8cm 50.8-66cm 58.4cm ++ starting from 35cm

X seam size† 63cm-34.5cm 82-105cm

Will suit age^ 2-5yrs 5-9yrs Up to 13yrs Adult ages 2 to adult 5-10yrs 10-16yrs

Max load 27kg 56.5kg 68kg 102.5kg 110 kilos 65kg 75kg

Price From $5200 – $6000 plus price for optional extras

From $720 $450 $830

#Rear Steering option adds 12" to length of bike. *Measurement of inside leg, from crotch to the bottom of the rider’s shoe. †Distance from the lower back to the soles of the feet. ^Approximately depending on size/weight. Please note that weights and measurements have been converted to metric when provided in imperial.

KmX K-3 and KomPacThow much fun can you handle?KMX recumbents have not been created specifically for the special needs market but are proving very popular anyway, with bikes selling to people with balance difficulties, CP, amputees and those with seizure disorders for whom a standard bike could be dangerous. ThegreatthingabouttheKMX(especiallyforkids)isthattheycanridesomethingthatlooks cool and that every other child would want. The recumbents are currently only available through the UK distributor’s website but we have heard first hand that they are great to deal with. www.kmxkarts.com

• Greatforpeopleofallabilitiesdueto

low centre of gravity and high stability.

• KMXbucketseatproviding

support and comfort

• Excellenthandling

• Qualityconstruction

• Verysimpleandquickassembly

• Veryrobustandlowmaintenance

comPariSon charT

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

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

Follow us

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

8 December 2014

There are no silly questionsIt’s very common for parents to feel overwhelmed and like they have little power to contribute to their child’s management, especially parents unfamiliar with the health care system. Gaining a basic knowledge about your child’s chronic condition can be empowering for parents, and to that end there are no silly questions.

Please never feel afraid to ask your Paediatric Team questions about your child. Making a list of questions before clinic appointments ensures that your concerns can be addressed. ‘Dr Google’ is not always the best way to search for answers, your Paediatric Team can direct you towards useful and reputable sources of information.

Complex care coordinationMany children with chronic illness will have a complex array of multi-system issues needing input from multiple medical and allied health teams. Attending hospital appointments, medical and surgical treatments, investigations, and going to school, can simply be a superhuman effort for some families.

It’s very easy for families to feel lost when multiple medical teams are involved in providing treatment, even if those teams are within the one hospital. This issue can be amplified for children living in regional locations, needing tertiary level care. Information is not always shared seamlessly between medical teams, health facilities, acute care and community agencies. Parents can often

Chronic illness in a child affects the whole family. Some chronic illnesses will create a significant burden of care for the child in the home and the community. Some chronic illnesses will require acute hospital admissions, and some are unfortunately life limiting. Negotiating and coordinating the minefield of medical appointments, therapy sessions, and providing complex care for a child with chronic illness are frequent sources of stress, anxiety, and frustration for families. There are four general principles to finding your way through the ‘medical maze’:

1. There are no silly questions

2. Ask for and/or nominate one medical team to be care coordinators for your child

3. You are your child’s best natural advocate

4. Incorporate your child’s chronic illness into your family life rather than letting it dominate your family

Working with families to help best manage children’s therapy and education services.

Occupational Therapy

Life Coach and Mentor

Disability Service Consultant and Facilitator

tel: 0448 316 319 www.nacre.com.au

CONSULTING

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

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

(07) 3324 2490 movementsolutions.com.au

Maximise your child’s physical potential

AdvoCAtiNg for your ChiLd iN A

medical minefield

WOrDS | dr david coman

December 2014 9

involves the potential for acute presentations to hospitals, e.g. seizures, it’s important to have an ‘Emergency Management Plan’.

Advocacy A parent is the child’s best natural advocate. Never underestimate your gut feeling if you think that something may be wrong. You are the voice of your child.

Chronic illness and the familyChronic illness in a child affects all aspects of family life. It’s easy for the child’s illness to dominate the family, and for siblings, relationships, and friendships to suffer as a result. Families can keep it all together by spending time together, having holidays, using respite services, maintaining adequate sleep and nutrition, exercising, sharing the load, and knowing that it’s okay to fall occasionally. Some childhood illnesses can be life limiting without any cure; which does not mean a loss of hope. Maintaining hope is an integral part of taking each day as it comes for families living with childhood chronic illness.

A/Prof David Coman MBBS MPhil FRACP General Paediatrician/Metabolic Physician/Clinical Geneticist Medical Director of Paediatrics, The Wesley Hospital, Brisbane

Ph 07 3371 5122, www.drdavidcoman.com.au, www.facebook.com/DrComan BoardMember,RareVoicesAustralia–www.rarevoices.org.au, www.facebook.com/RareVoicesAustralia

feel like they have to be the ‘treating team’ holding it all together. This can be very stressful for families.

The best way to maximise care coordination for a child with a chronic illness is to have a designated Case Manager. This can take the form of a ‘complex care service’ or a dedicated ‘home team’. Many children’s hospitals have developed a complex care team to help coordinate appointments, transition from the hospital to the community, and facilitate communication amongst the medical teams. These services can be an excellent resource for families, though are hampered by not providing after hours services.

Having a dedicated and engaged Paediatric Team as your child’s go-to team for coordinating care, providing care continuity, and assisting with emergencies is an invaluable resource for families. Most commonly, this key coordinating team will be the General Paediatricians, those working in both the public and the private sector. An important role of the complex care team is to assist parents liaise with social work colleagues to ensure that they are receiving all available financial assistance e.g. Centrelink enrolments, Better Start packages, Medicare safety net etc.

Ask your coordinating team to develop a ‘Care Plan’, which is a living document that contains an up-to-date summary of the clinical problems, all treatments, therapies, nutrition, medications and routines specific to your child. It is unreasonable to expect a parent to remember every detail about their child’s chronic illness when they present to emergency departments, or outpatient clinics. A well maintained care plan assists to ensure accurate information is available to everyone providing care for the child, and takes the onus off the parent to be the custodian of masses of complex medical information. If your child’s chronic condition

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 Service65 Amy Road Launceston - 11A Gant Street, Lenah Valley www.stgiles.org.au

We only see the ability within.

10 December 2014

colleagues and police officers who work with Erin, have conducted a reconnaissance mission and say it’s going to be a difficult journey.

‘‘There are some hairy spots that will take a bit of work, but we won’t be in any hurry, so we’ll be nice and cautious,’’ he says.

“We have made sure it is possible, but it is well and truly going to be a good challenge.’’

Overland Jack is raising money for Life Without Barriers, a national organisation supporting nearly 2000 people with a disability to live a better life.

“Kids like Jack are only limited by what we do for them really,’’ Chris says.

“Jack is one of the lucky ones. Those around him are healthy enough and able to support him in his adventures. Jack wants to raise money for other people who aren’t so lucky and need help in breaking down their own real or perceived barriers.’’

This is not Jack’s first foray into fundraising. Kayak Jack involved a600kmpaddlefromLauncestontoHobart,raising$70,000for St Giles a few years ago. In 2013, Jack and Chris ran the Ross Marathon - Running Jack - to fund new equipment for Jack, which is a constant and expensive challenge.

This new mission is hoping to raise a similar amount, with donations already trickling in on a Go Fund Me account. You can also check out the Overland Jack Duffy Facebook page for more details and updates at www.facebook.com/kayakjack.duffy.

tasmania’s world-renowned overland track will form the backdrop for a special fundraiser for an extra special little boy.Eight-year-old Jack Duffy, from Launceston, has Cerebral Palsy Spastic Quadriplegia and Epilepsy – meaning he can’t walk or talk and requires constant care.

But that hasn’t limited his adventurous spirit.

With the help of his dad and mum, Chris and Erin, joined by a dedicated group of friends and volunteers, Jack will be carried on the65kmtrekinTasmania’scentralhighlandsinAprilnextyear.

‘‘We like to do these things with Jack while Erin and I are capable of doing it,’’ Mr Duffy said.

‘‘In the future, when Jack’s bigger, we’re not going to be able to do these things.’’

They are fully supported by their other two children, Jaimie and Xavier, who couldn’t be prouder of their little brother and often enjoy time out doing ’̀normal’ things with their parents when Jack is in respite care.

Training and campaigning for Overland Jack has begun in earnest, with Chris determined to carry his son’s 25kg frame in a specially-designed back pack throughout the six-day journey.

Some members of the group, including Chris’s firefighter

OverlandJack

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.

Childcare for children of ALL abilities

Phone 0412 363 856www.hummingbirdseies.com

Bringing you sensory and educational Toys

Ph 0400 375 351 or visit www.thetoybug.com.au

December 2014 11

12 December 2014

This is just part of the R82 range. To find out more or locate your nearest stockist, go to www.R82.com.au

Nothing compares to a smile!

SpecialiStS in technical aidS for children

R82 contributes in fulfilling the increasing demand for high quality aids designed for children and teenagers with special needs. Better products means better quality lives for our users.

SeatiNg products such as the x:panda, Stingray stroller and Wombat

BathRoom products such as the Manatee, Flamingo and Swan

StaNdiNg aids such as the Caribou and Rabbit

WalkiNg aids include the Mustang and Crocodile

December 2014 13

SpecialiStS in technical aidS for children

One of the struggles parents and carers face is what to do when a child grows out of traditional paediatric equipment. They’re often too small for adult equipment but there’s nothing in between. Until now! We have found the new R82 Heron which has recently been launched here in Australia.

One of the key benefits we have found with the Heron is the great positioning options. Not only is it able to tilt and recline but it also has a handy hydraulic lever which allows the user to be positioned just at the right height to help avoid sore backs!

Not every child and young adult is the same, so R82 has created a wide variety of accessories that can be added to best suit the users needs. These include hip supports (for growth), head supports, side supports and more.

For more information, contact R82 at www.R82.com.au

What to do when your child grows out of their shower/toilet chair…

14 December 2014

All About nutritioni have real interest in food (not only the muck around in the kitchen, creative part; or the delicious ‘sit with friends and family over a long lunch’ part; although i love those too). i am fascinated with the concept of ‘food as medicine’ and the new (but actually ancient) approach to eating that is slowly making its way back into the mainstream collective.

As parents of children with special needs, most of us have probably had to deal with dieticians, allergies, food avoidances and diet regimes at some stage or another. NG tubes, PEG Feeding, Ketogenic Diets, and extreme allergies, Coeliac disease and eczema are all part of our vernacular. We have sensory issues and sensitivities to E numbers; children who can’t sit at the table long enough to swallow, who vomit at the sight of banana, who only eat beige. Children who would love to eat but whose muscles have degenerated too far. Children who have absolutely no interest in eating anything other than yoghurt. There is a common misconception baby books like to roll out that ‘a child will not starve themselves’. Tell that to the mother of a child who is being intubated while in non-convulsive Status Epilepticus.

As we become sicker and more obese as a society, new research is showing that perhaps the ‘low fat high carb’ advice of the past forty years is not correct. That our guts and our brains are linked. That perhaps we can eat ourselves well. So many parents have already worked out that stopping wheat/gluten/dairy has improved their child’s skin or behaviour or ability to concentrate. That the Ketogenic Diet, which is high fat, with almost negligible carbohydrates, can help to control seizures. I find it extremely empowering to know that I can help to make a difference in the general health and wellbeing of both my children and myself.

In this feature we have two guest contributors, who are experts in their fields – Pete Evans, Chef and Nutritionist and Heidi Hosking, Speech Pathologist and Health Coach, sharing their advice for a healthier you. Please remember that we are all individuals and there is no ‘one size fits all’ solution for all of us. Please consult with your medical practitioner before making any drastic changes to your diet.

Good nutrition

December 2014 15

How inflammation can affect your child’s body

Inflammation can occur in different parts of the body, depending where the body is being irritated. Irritation occurs via a food or toxin that the body is sensitive to. Contact initially occurs on the skin or in the digestive system, in the intestines or ‘gut’.

Inflammation of the respiratory tract is linked to asthma, ear infections, sinusitis, and constant mucous.

Inflammation of the gut is linked to eczema, constipation/diarrhoea, low immunity, bloating, food sensitivities and other autoimmune conditions such as Type 1 Diabetes.

Inflammation of the brain is linked to ASD, asthma, ADHD or similar behavioural issues, ‘brain fog’/spaciness, inability to play or concentrate, fatigue, headaches.

When do I start?

Whilst most parents aim to serve healthy foods from first solids, there is plenty of research proving that what you eat before and during pregnancy, and whilst breastfeeding, contributes more importantly to the development of your child. Promoting healthy eating from first solids also insures your child against nutrient deficiency and thus childhood illnesses and symptoms. By creating a healthy palate from the very beginning, your child will also be less likely to develop adult diseases and even cancer down the track.

Dealing with fussy eaters

Children with disabilities can be highly sensitive and struggle with the different sensory properties of food. These properties might be taste, texture, smell, sight, temperature and even the sound of it being chewed. Sensitive children may need many more exposures to a food before they will eat it, than another child. The key is to persist in presenting new foods on or next to your child’s plate without pressure or expectations to eat them. Let your child dictate the pace and provide them with enough foods that they do tolerate to fill them up in the meantime. Seeking out an ‘SOS(SequentialOralSensory)feedingprogram’withyourlocalSpeech Pathologist, Occupational Therapist or Psychologist is a great way to get more help.

We are what we eat. Yes, research is now proving more and more that this is true. If we all focussed on becoming ‘nutritarians’(eatingfoodsonlyhighestinnutrients,thatsuitourbioindividuality)andavoidinginflammation,ourchildrenwouldbehealthier and more likely to develop to their full potential.

Bioindividuality acknowledges that not one person is made the same! Whilst one person may be able to survive eating a vegetarian diet, another person truly needs animal products to survive. This means that all of us were never meant to be able to digest ALL foods easily. Genetics, blood type and many other factors contribute to our bioindividuality. Children also differ in their ability to digest different food groups.

Instead, more and more children are suffering from allergies, food sensitivities, ASD, ADHD and other childhood illnesses and symptoms such as eczema, low immunity, chronic ear infections, constipation, asthma and even bedwetting. Children with disabilities can also present with many of the above issues, which can affect their health and development just as much as typically developing kids.

The main health concerns of today’s childrenInflammation – is one of the root causes of illness and later adult diseases and even cancer. Diet and exposure to toxins in the environment directly affect your child’s chances of living with inflammation. Just because you can’t see inflammation, doesn’t mean it is not there. The longer our bodies live with inflammation, the more likely we are to experience diseases and even cancer. We can prevent our children living with inflammation and the associated health issues by looking at potentially irritating foods, reducing the amount of processed foods eaten and buying organic where possible. Finding alternatives to chemicals used in the home is also ideal.

Candidiasis(orcandida/yeastovergrowth)–isanotherpandemicissue for our children’s health. This occurs when our healthy gut flora is out of balance, allowing yeast to take over the gut. Before it is even born, a foetus can take on excess yeast in its mother’s diet systemically, by ingesting her amniotic fluid.

Antibiotics, antibacterial soaps, chlorine and our ‘clean’ lifestyle these days contribute even further to an imbalance in our children’s gut health. Sugar, gluten and refined carbohydrates also feed candida.

Health issues and symptoms related to candidiasis:

• Asababy–cradlecap,thrush,nappyrash,eczema

• Asachild–anxiety/worry,asthma,ASD,behaviouralissues,chronic ear infections, constipation/diarrhoea, cracks in lip corners, craving for carbs and sugar, gluten intolerance, sinusitis, sleep issues, spaciness

• Asanadult–moreautoimmunedisorders,Alzheimer’s,rheumatoid arthritis, diabetes, obesity, infertility, OCD

Making health work for your kids

WOrDS | heidi hosking, Speech Pathologist and health Coach IrrITATING fOODS • sugar

• dairy

• yeast

• gluten

• unfermented soy

• corn products

• processed oils (aim to always used cold-pressed olive, coconut, macadamia, sesame or avocado oil)

• processed carbohydrates

• food additives (all colours, numbers and other words you don’t recognise)

16 December 2014

Healthy food ideas

Breakfast – egg on toast with avocado, smoothie with any non-dairy milk, coconut yoghurt, tahini, organic

berries, chia, linseeds, nuts, raw egg and supplements or frittatas baked in muffin tins. Add fruit, yoghurt and

pepitas or sunflower seeds to gluten free Weetbix or GF rice puffs if your child has to have cereal.

Lunch – any of the above options, roast sweet potato or pumpkin, avocado, seed mix, nuts, basil and cucumber, rice salad including chicken, cucumber, grated carrot,

tahini or olive oil, GF sandwiches with either tahini, mashed egg and avocado, homemade cashew butter or

pesto, corn thins with hommus and alfalfa.

Dinner – any of the above options, coconut flour-crumbed fish, chicken nuggets with homemade coleslaw and avocado, fried cauliflower ‘rice’ with finely sliced carrot, kale, mushrooms, vegetable soup, slow-cooker meals

with quinoa, brown or basmati rice.

Snacks – kale chips, dry-roasted chickpeas, ‘Paleo’ banana bread, fruit, vege sticks and homemade hommus or pesto,

coconut yoghurt with organic berries/puffed millet/amaranth/seeds on top.

Superfoods for kids

Does your child need to put on weight? Does your child need some good brain food? Could your child use more

nutrients? Assuming they are getting enough of these typesoffoods(andavoidingallirritatingfoods–seeinfobox)yourchildshouldnotstrugglewithweight,health, and many behavioural or physical symptoms.

Fruit – Low sugar varieties such as organic berries or passionfruit are the best in avoiding excess fructose,

which spikes blood sugar and feeds candida. Otherwise go easy on too much fruit.

Vegetables – Emphasise veges such as dark, leafy greens(graduallyintroduceinsmoothiesorkalechips),cauliflower,cabbage,broccoliandherbs.Thismay be just exposing your child to these at first. The

more variety of vegetables your child will eat, the greater variety of nutrients they are gaining.

Fats – Research is proving a child’s brain needs plenty of ‘good’ fats. This includes plant-based such as avocado,

organic nuts not including peanuts, seeds such as pepitas, linseeds, chia and sunflower seeds and cold-pressed oils such as olive and coconut oils. Other

coconut products such as flakes, coconut yoghurt and coconut milk are also ‘good’ fats. Some animal fat is also

good.Organicgrass-fedmeatwithsomefat(grass-fedfatmeansOmega3oils),fishoilandeggsaregoodsources.

Protein – Aim for organic, grass-fed, hormone-free meats, which ensures less chemicals but also better fats. Chia seeds are a great plant-based protein source too.

Helping children to eatOnceyourchildismanagingasoftdiet(suchassandwichesorcookedvegetablesandfruitpieces),takenotice if they really move the food around their mouth and chew it properly or if they swallow it down quite quickly. This indicates your child may not have developed the tongue movements to place food over their molars for chewing. If not, there is no point in giving foods thatrequiresubstantialchewing(suchasmeat),mixedtextures(suchaslumpysoups,pasta/ricedishesorevencerealthathasnotgonesoggy)ortinypieces(suchassultanas)whichrequireevenmoretonguecoordination. Instead, help your child to learn to move their tongue by letting them practise with either a soft NUK brush(foundinchemistsorsupermarket)orastickofhardfood(thatyourchildcannotbitelargepiecesoff)such as carrot, celery or say beef jerky. Allow your child to hold this between their teeth and munch at it. This will promote stronger jaw strength and encourage more movement of their tongue. Because the brush or food has a handle, your child will be able to transfer it from side to side, within their mouth and not ‘lose’ it. Once you see tongue movement, start to notice if your child copes better with soft foods before even thinking about introducing the more difficult foods.

Children with disabilities can have reduced sensitivity inside their mouth. This means they may tend to overfill their mouth, just to be able to feel it is there. For children with weaker oral muscles, stuffing more food in ensures the tongue and cheeks have less work pulling the food together to form a ‘bolus’ for swallowing. Help your child to learn how much food should go into their mouth by restricting the amount available on their highchair or plate at one time. Teach your child to ‘bite and pull’ by modelling this action. This will help them to see how to manage bigger pieces. Remember some textures make it harder to form a bolus within the mouth, such as a peanut butter sandwich on white bread.

Substitutes for foods that cause inflammationSugar – fresh fruit, coconut water or small amounts of natural sweeteners such as raw honey, dates, xylitol, maple syrup or rice malt syrup.

Gluten – quinoa, brown or basmati rice, rice noodles, cellophanenoodles(mungbeanvermicelli),Sakataplainricecrackers(onlytypewithoutMSG),organiccorn thins, coconut flour, tapioca flour, almond meal, SanRemoglutenfreepasta,glutenfreebreads(checkforpreservative282).

Dairy–tahini(sesameseedspread),organicalmondsand dark greens in pesto or smoothies for calcium substitutes(youmayalsoneedacalciumsupplement).Coconutyoghurt(simpletomakeyourown),rice/coconut/almond milk, coconut oil for butter.

December 2014 17

Throughout all of this and afterwards, one question that wouldn’t go away was: how can some children be born with no apparent health problems, whilst others face different health challenges and issues? This one question has led me to study, to research, to work with some of the brightest minds in holistic health around the globe, and ask the questions that I believe need to be asked. I am still learning as they are, and I will continue to keep an open mind to new therapies, treatments and new information.

Yes, diet, as well as lifestyle, emotional wellbeing, genetics, toxic pollutants, our environment, and a host of other things that we do not even know about yet, may play a part in the health of the next generation and of course in our own health.’

In the foreword of Family Food, Pete acknowledges that it can be a bit overwhelming embracing a new way of eating – and that is why he chose to write Family Food. He has included all the family favourites, Paleo style, including sweets, desserts, Christmas ideas and baby food. Even if you aren’t a Paleo devotee, there is certainly place for a healthier alternative in everyone’s kitchen.

television star and (sometimes controversial) Paleo enthusiast, chef Pete Evans has just released his new cookbook family food, which includes 130 gluten free, dairy free and sugar free recipes, that have been chosen to appeal to families, with easy instructions and accessible ingredient lists, that everyone can make.

Pete Evans explains why he is so passionate about health, nutritionandtheconceptoffoodasmedicine(inanexcerpttakenfrom:www.facebook.com/peterevanschef):

‘My first daughter was born over nine years ago and within an hour of her birth the doctor came and told me that she had a tumour that needed to be removed asap. She had the surgery when she was two weeks old. For the next three years she had to go back every three months, for test after test, to see how she was progressing and I am sure I don’t need to tell you the pain we all felt. One time, about two years later, her blood tests came back and the doctor said he needed to operate again in three months time if her blood tests kept going the way they were… At that point we went to see a natural therapist who worked on her holistically, and within three months her tests had reversed, which meant she didn’t need another operation. To say that I was amazed at what diet and holistic therapies achieved was an understatement and I became passionate again about health and nutrition. Is she in perfect health at the moment? Not always. But I am aware that diet as well as other factors makes a real impact on her system, and we are constantly doing our very best to keep both children and ourselves as healthy as possible and focussing on healing our guts.

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A word about nutrition

Good nutrition

WOrDS | Pete evans, Chef and Nutritionist

18 December 2014

Good Nutrition

Spaghetti and MeatballsTo make the meatballs, melt 1 tablespoon of the ghee or coconut oil in a frying pan over medium heat. Add the spinach and cook for 2 minutes until just wilted. Drain the spinach and leave to cool. Once cool, squeeze out any excess liquid, roughly chop and transfer to a bowl. Return the pan to medium heat and add 1 tablespoon of the coconut oil or ghee, the shallot and garlic. Fry for 3 minutes, or until the shallot is translucent and the garlic is lightly browned. Set aside. In a large bowl, mix the pork mince, beef mince, spinach, shallot and garlic, parsley, egg yolk and some salt and pepper until well combined. Roll into golf ball-sized portions and set aside. Preheat the oven to 180°C. To make the tomato sauce, heat the coconut oil or ghee in a saucepan over medium heat. Add the garlic and fry for 30 seconds, or until lightly browned. Pour in the tomatoes and 125 ml of water, then simmer for 20–25 minutes until the sauce has thickened. Add the basil and simmer for a further 2 minutes. Season with salt and pepper. You can blend the sauce if your kids prefer it smooth.

To cook the meatballs, heat the remaining 2 tablespoons of coconut oil or ghee in a large ovenproof frying pan. Add the meatballs and fry until golden on one side. Turn the meatballs over and place the pan in the oven for 5 minutes until the meatballs are cooked through. Remove the pan from the oven, add the tomato sauce, cover and keep warm.

To make the vegetable spaghetti, fill a saucepan with water and bring to the boil over medium heat. Add the carrot and cook for 30 seconds, then add the zucchini and cook for a further 30 seconds, or until tender. Drain, toss with a splash of the olive oil and season with salt.

Divide the spaghetti between four serving plates, top with the meatballs, spoon on the tomato sauce, sprinkle with the parsley or basil and serve.

Serves 4

4 tablespoons coconut oil or ghee*

2 handfuls of baby spinach leaves

1 french shallot, finely chopped

2 garlic cloves, finely chopped

350 g pork mince

150 g beef mince

2 tablespoons finely chopped flatleaf parsley leaves

1 egg yolk

himalayan salt or sea salt and freshly ground black pepper

1 large handful of flat-leaf parsley or basil leaves, finely chopped, to serve

TomaTo Sauce2 tablespoons coconut oil or ghee*

2 garlic cloves, thinly sliced

500 g (2 cups) canned crushed tomatoes

8 basil leaves, chopped

veGeTable SPaGheTTi3 large carrots, cut into spaghetti

strips on a mandoline or slicer

6 zucchinis, cut into spaghetti

strips on a mandoline or slicer

2 tablespoons extra-virgin olive oil

December 2014 19

Good Nutrition

Blueberry and chia ice creamTo make the blueberry jam, combine all the ingredients in a small saucepan, mix well and place over medium heat. Bring to the boil, then reduce the heat to low and simmer, stirring occasionally, for 35–40 minutes, or until the jam is thick. Remove from the heat and set asidetocool.Pourthejamintoa750mlsterilisedjar(seeleftforinstructions),sealandrefrigerate until required.

To make the ice cream, place the coconut cream and coconut milk in a saucepan and bring to the boil, stirring occasionally. Remove from the heat. In a large heatproof bowl, whisk the egg yolks and honey or maple syrup until light and fluffy. Pour half of the hot coconut cream mixture into the egg mixture and whisk well. Whisk in the remaining hot coconut cream mixture, then pour into a clean saucepan. Cook over medium heat, stirring with a wooden spoon or spatula, until the mixture thickens slightly to form a custard and coats the back of the spoon. Strain through a fine sieve into a bowl. Cover with plastic wrap and chill for at least 2 hours.

Pour the coconut custard into an ice cream maker and churn according to the manufacturer’s instructions. Fold in 300 g of the blueberry jam and the chia seeds, transfer to an airtight container and freeze until firm. Place the ice cream in the refrigerator to soften a little before serving. The leftover jam can be stored in the refrigerator for up to 3 months.

Makes 1.3 litres

450 ml coconut cream

450 ml coconut milk

4 egg yolks

180 g (1/2 cup) honey or maple syrup

3 tablespoons black or white chia seeds

blueberry jam

600 g frozen blueberries, thawed

240 g (2/3 cup) honey

juice of 1 lemon

To sterilise your jam jars, wash them in hot, soapy water and run them through a hot rinse cycle in your dishwasher.(Ifyoudon’thaveadishwasher, boil the jars and lids in a large pot on the stove for 10 minutes, then place them on a tray in a 150ºC ovenfor10minutes,oruntildry.)

TIP

20 December 2014

Male carriers pass a pre-mutation or a full mutation of the Fragile X gene on to all their daughters but cannot pass it on to their sons.Most males with Fragile X Syndrome are significantly affected intellectually, physically, behaviourally and emotionally.

About one-third of females with Fragile X Syndrome have a significant intellectual disability; others may have moderate or mild learning difficulties and emotional issues including anxiety.

Wendy says that children with Fragile X can live fulfilling lives, and that is further enhanced if there is early intervention, involving a range of educational, medical and behavioural therapies. “Once parents are aware of the condition, they are in a position of power,’’ she explains.

Wendy says that the Association is challenged in the fight for the fundraising dollar, but is doing its best to ensure it can provide support and assistance to families affected by FXS. “It is an enormous task given that Fragile X Syndrome is one of thousands of genetic disorders,’’ Wendy admits.

“We receive no government funding so are constantly looking for donations and the support of philanthropic individuals and organisationstofundourstaffandservices.”TheAssociationfunds specialised clinics, mobile workshops and counselling, while working to increase public awareness of Fragile X.

“Our website is the first port of call for families when they receive a diagnosis. Some may be just coming to terms with the diagnosis andlearningaboutFXS,”explainsWendy.“Wealsoemployacounsellor two days a week to speak with families when they need to and we assist with information on doctors, occupational therapists or speech therapists with experience with FXS.’’

Every week across the country, one child is born with fragile X Syndrome and 20 more are born who are carriers of the fragile X gene. An estimated 90,000 Australians are affected by the condition.

But the genetic condition, which is the leading cause of inherited intellectual disability, and causes behavioural, emotional and learning challenges, receives little attention despite its prevalence being on par with Cystic Fibrosis.

TheFragileXAssociationofAustralia(FXAA)isattemptingtochange that, by shining a spotlight on the syndrome, which is caused by the expansion or lengthening of the Fragile X Mental Retardation(FMR1)geneontheXchromosome-knownasagenemutation.Onein3600malesandbetweenonein4000–6000females have the full mutation Fragile X Syndrome. This means that they are seriously affected by Fragile X Syndrome and will have lifelong disabilities and challenges.

Wendy Bruce, Executive Officer of the Fragile X Association of Australia says the profile of the syndrome needs to be lifted because many people in Australia are unknowingly carriers of the condition. 

“The prevalence of carriers is considerably higher with one in 800 males and one in 170 females being carriers of the Fragile X gene. This means they are in the pre-mutation range and have thepotentialtoproduceachildwithFragileXSyndrome”,sheexplains. Due to the inheritance pattern of Fragile X Syndrome, it also means that their extended family members may be carriers and therefore at risk of producing a child with the condition.

The advancement of medical science now allows for greater screening to give carriers a choice when it comes to reproduction. “There is now a lot more screening and genetic testing available,’’ Wendy says.

“The FXAA encourages couples who are keen to start a family to consider pre-conception screening to see if they are at risk of having a child with Fragile X Syndrome, or some other genetic condition. This is particularly important if there is a family history of intellectual disability, autism or Fragile X Syndrome. There are manymoreoptionsnowwithIVFsuchasgeneticscreeningpriorto embryos being implanted – so it is about giving people choices.’’

Women who are carriers of a pre-mutation or full mutation have a 50 per cent chance of passing it on to each of their children – either as full or pre-mutation.

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December 2014 21

The Fragile X Association also has a Facebook page with 1000 followers, which includes a discussion group allowing members to ask questions and share their stories. “It is a wonderful opportunity to connect and converse with people in a similar situation,’’ she says. “Because Fragile X Syndrome is relatively rare, there is not necessarily going to be someone in the next suburb to go and have a cup of tea with to shareafamily’sstory.”

What is Fragile X Syndrome?Fragile X Syndrome is the most common known inherited cause of intellectual disability and the most common known single gene cause of Autism Spectrum Disorder.

• 5%ofchildrenwithFragileXSyndromewillalsohaveanaccompanying condition such as Autism or Down Syndrome. As it is an inherited condition, investigation for Fragile X Syndrome is essential regardless of a diagnosis of some other condition as other family members are at risk of carrying the Fragile X gene and need to be identified.

• ThereisnosinglepresentationforchildrenwithFragileXSyndrome. It occurs in both males and females but males are more frequently and generally more severely affected than females.

Jimmy Jones

• FragileXSyndromeisalifelongconditionthatcausesintellectual disability, learning difficulties and speech and language delay.

• Italsocausesanumberofbehaviouralandemotionalproblems, such as social anxiety, avoidance of eye contact, ADHD, mood instability, aggression and at times, withdrawal from social interaction.

• However,peoplewithFragileXalsohaveveryreal strengths including a high aptitude for visual learning and imitative behaviour, long term and incidental memory, the ability to relate and take part in concrete and relevant tasks, good functional life skills and are friendly with a good sense of humour.

Keeping up with the Jones’ takes on a different meaning for the family of one young FXS sufferer. Jimmy Jones, now six, was diagnosed with the genetic form of autism when he was 14 months old but that hasn’t stopped his passion for boisterous activities.

“Jimmy loves being at the beach, throwing balls and bouncing on the trampoline,’’ says his mum, Sarah. “We try to focus on Jimmy’s ability rather than his disability. We don’t know what the future will hold for Jimmy but we will give him every opportunity to be the best he can be.’’

Sarah says Jimmy, who has a full mutation Fragile X, has severe anxiety issues. However, his communication skills are okay and his comprehension is very good.

The Ballarat mother of three – her two daughters (Zara, 8, and Sadie, 3) do not have FXS and are not carriers – said she had never heard of the condition before Jimmy was diagnosed. “We did know something was wrong, hence our constant questioning of doctors and specialists since he was five weeks old,’’ recalls

Sarah. “Jimmy has had occupational therapy, speech therapy and physiotherapy since he was 10 months old.

“We are very lucky to have Jimmy in our life. He has taught us so many things such as patience, tolerance and unconditional love. Mostly he has taught our family to appreciate each other.’’

Sarah says she and her husband tried PGD IVF when trying for their third baby, to rule out having a second child with Fragile X, however it did not work and they conceived Sadie naturally.

“There are so many different things that you can test for when having a baby, but at the end of the day you cannot test for everything and even if you do, things can still go wrong,’’ Sarah says. “My advice to parents is be the best parent you can be to the child you are given and who knows what the future will hold for all of you.’’

22 December 2014

Supporters appear to be gaining traction with politicians who are softening their stance on the issue, while the AMA continues to demand a rigorous, evidence-based assessment process in line with any new drug treatment.

An agreement for a national approach was brokered at last month’sCouncilofAustralianGovernments(COAG)meeting.

ItfollowedaNewSouthWales(NSW)Governmentdecisiontoapproveaclinicaltrialformedicalcannabis,whichtheVictorianand Tasmanian Premiers have agreed to support and possibly allow the trials to expand to their jurisdictions.

The trial will be established to further explore the role that cannabis can play in providing relief for patients suffering from a range of debilitating or terminal illnesses.

A Working Group has been formed to set up the clinical trial, and is due to report back to Government by the end of the year. Concerns around the issues of supply and distribution will be covered in the trial.

The NSW Government has also announced NSW police guidelines will be implemented to formalise the current arrangement which allows Police to exercise their discretion not to charge terminally ill adults who use cannabis to alleviate their symptoms.

A similar motion from Greens MP Cassy O’Connor is in front of the Tasmanian Parliament as we go to print.

For those at the coal face, they are sick of waiting and are far from giving up. A class action law suit is being organised by a familyinVictoriawhorequiredaccesstocannabisoilforthetreatment of childhood Epilepsy. They claim that failure to allow a person access to lifesaving medicine is unlawful under international disability discrimination laws.

This story continues to evolve and we will keep you up-to-date via the Source Kids website and social media.

As this edition of Source Kids hits the shelves, the inaugural Australian Medicinal Cannabis Symposium is being held in tamworth.The event is bringing together medicinal cannabis experts from around the globe to inform the Australian people, policy makers, medical professionals, carers, patients and the police about the treatment.

“This inaugural Australian Symposium is about utilising lessons already learnt from overseas to help Australia find a solution based on compassion,’’ says spokeswoman Lucy Haslam.

“It is about learning from overseas. It is about seeing where Australian scientists are up to. But above all, it is about helping Australian carers like myself and sick Australians like my son, Dan, to be recognised as people just trying to access medicine which relieves debilitating illness and disease. 

“It is about freeing us from the stress and stigma of being considered criminals. It’s about giving sick Australians other options when conventional pharmaceutical medicines have failed them. It is about basic human rights!’’

Medical marijuana

momentum is in overdrive in australia.

December 2014 23

What do you do when the cot is just not big enough anymore (or your special needs child can climb over the side, potentially

falling and hurting themselves)?

What is a safe option for a child who wakes during the night and could injure themselves during midnight jaunts around their room? My Miss A had this anxiety-creating mini leap from the cot to the changing table going on – and then she couldn’t get off the changing table. Which made for lots of sleepless nights for her mother.

In houses all across Australia there are families battling the middle-of-the-night shenanigans with their special needs children. And disturbed sleep makes for a cranky mummy – and no one wants a cranky mummy.

Luckily, Medifab managed to locate a German manufacturer who was able to provide the Safe Surround specialty beds that have met the requirements in a cost-effective, attractive and superior solution. They have been importing the beds for 10 years, helping to give parents and caregivers around Australia and New Zealand the peace of mind they need at nighttime.

Medifab are able to customise the beds to meet individual medical, physical and behavioural requirements. Some common customisations include padded interior, Perspex glazing, external door locking system, pressure relieving mattress – and more! They welcome discussions with their specialist product consultants to create the ideal bed to suit.

After consulting with your visiting therapist, applications can be madeforequipmentfundingthroughgovernmentbodies(howevernotallstateswillcontributeforthis).Charitiesarenormallyableto contribute the bulk of the funding. Medifab is also able to help brainstorm funding options for these beds in your area.

SaFe SurroundS

BedWhen five-year-old Tristan Williamson* hopped into his

brand new Safe Surround Plus Bed from Medifab with his soft toys and said “night night”, it was a special moment for his parents Derek and Anna. Before the arrival of the bed the Gisborne couple had endured a year of ‘awfulness’ trying to get their young son to stay in his bed and sleep.

Tristan is a busy boy, who has Autism, a global developmental delay and limited speech. Tristan accepted the bed straight away and instantly felt comfortable in it. He still wakes in the night. But instead of wanting to get up, he now quietly plays with his soft toys and soon goes back to sleep. Anna says the bed has made a big difference to family life: “You can’t put a price on our peace of mind knowing he’s safe. The bed is brilliant and we are really grateful for our therapist’s perseverance to secure the funding for it. I absolutely recommend it.”*names changed

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24 December 2014

Fun in the sun

CHALLENGE Sunblock/sun safetyApply sunblock to everyone before you leave the house. If your child is likely to lick the sunblock there are lots of lovely natural kinds available from your health food store. Lots of children are sensitive to sunblock, coming out in a kind of dermatitis. This is usually due to the absorbents in the cream. A zinc-based or absorbentfreesunblock(weuseSunSenseSensitive)seemstowork well instead – but be prepared for the white sheen, as the cream won’t rub in entirely. If your child simply cannot tolerate having sunblock applied, you may want to consider purchasing a long sleeved rashie and hat, and making sure to move into the shade/back inside after 10am.

I have one child who is allergic to sun block and another who cannot tolerate having sun block applied and will not wear a hat. Because of this, and the fact that we are early risers, we like to go to the beach first thing. We take our breakfast with us and have that on the beach, and then, when it starts to get hot, we are ready to leave and get home for showers, lunch and rest time.

CHALLENGE Hates car ride/sitting stillI’ve just discovered these brilliant vibrating pillows made for children to help ‘soothe and calm the body through vibrations’. Perfect for children who find it difficult to sit still and are good for car rides or whenever they may need to sit still for a while.

it’s summer time!!! the time to enjoy longer days, relaxing outside, holidays and beachy fun (if the advertising agencies are to be believed). sometimes it can feel like the rest of australia is outside making the most of life, while you are stuck inside because it is too difficult to even get to the pool or beach – let alone manage your special needs child while you’re there.

It’s really easy to get stuck into the mentality that it is just too hard. I know. And it can definitely be challenging to prepare and organise your child but hopefully with a few of these obstacles overcome, you’ll be outside participating in the summer fun too.

CHALLENGE AnxietyWhen your child is anxious: Lots of our special children struggle when something new happens – even when it’s something fun. You can help your child work through how something like a trip to the beach might happen including how you would get ready, travel to the beach, get on to the sand, where you would sit, what you would eat, that you would wear sunblock and a hat to protect yourselves from the sun etc. etc. by using a social story. Going through the story regularly could help your child feel comfortable with the change in the routine.

When you are anxious: So many people suffer from depression and/or anxiety at some stage or another in their lives. If things feel too difficult all the time, or you stop wanting to leave the house or see your friends have a chat to your GP. Caring for a child with specialneedsisahugeburden(asmuchaswelovethem)anditiscertainly not a sign that you are ‘weak’.

CHALLENGE Getting ready to goI like to pack my beach bag the night before, so there is something less to do when trying to get out the door. I prepare the food we will be taking with us and fill water bottles the night before, so I can just grab them from the fridge in the morning.

We lOVe THe SeNSeeZ CUSHION $56.50 FROM SKIll BUIlDeRS

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To enter go to www.sourcekids.com.au/competitions

Fun in the sun

December 2014 25

CHALLENGE Staying hydrated

Some quick holiday hydration tips thanks to Hydralyte

1. The whole family should have access to clean fresh water

– everyone will be more likely to drink it if it’s slightly chilled so freeze the bottom quarter of the bottle the night before.

2. When you’re spending a day out in the sun pack a water

bottle for everyone with their name on it – this way you can monitor how much everyone in the family is drinking(ornotdrinking).

3. If you’re taking an esky, you could use electrolyte ice blocks as extra ice to keep food cold. They’ll be a delicious

hydrating treat for everyone when you open it up.

4. If it’s really hot and you notice some members of the group are suffering from dehydration, water or sugary drinks may

not be enough to replace lost fluid and electrolytes. Pack some clinical hydration to minimise the chances of heat related illnesses.

5. To avoid heat related illnesses: be smart...and sun smart! Slip, slop, slap, slide, seek. And don’t forget to SIP.

How much should we be drinking?

As a basic guide, most healthy adults need about 1.5 to 2 litres of fluid a day. This includes water contained within foods. You will need to drink more than this if the temperature is high, you’re exercising or you’re sick.

For infants and children the Australian Dietary Guidelines recommend:

0-6months:0.7L/day(frombreastmilkorformula).

7-12months:0.8L/day(frombreastmilkorformulaorfoodorotherliquid-roughly0.6Lasfluidcomponent).

1-3years:about1.4L/daywater(fromfluidandfood)or1.0L/daygeneralfluids(water,milketc.).

4-8years:1.6L/daywater(fromfluidandfood)and1.2L/daygeneralfluids(water,milketc.).

How long between drinks?

There is no set fluid timing requirement. The main aim is to avoid the early signs of dehydration. If you know the family will be spending a big day out in the sun it’s important to start hydrating the day before and in the morning before you take off.

Monitor for early signs of dehydration, including:

• Stickyordrymouth

• Increasedthirst

• Fatigue

• Dizziness

• Irritability

• Headache

• Darkyellowurine

• Decreasedurineoutput

CHALLENGE Actually getting on to the beachThis can be the most chaotic part – for me, anyway. If your child is eligible for a disability parking permit, make sure you apply for one. There are usually disability parking spaces right at the entrance and they have more space, so it’s closer and easier to manage. Some beaches have beach wheelchairs you can borrow. Ring up your local surf lifesaving club to see if they have one. Thebeachwegoto(Noosa)hasonethatwasdonatedbythecommunity. The lifesavers will bring it over to the car and then wheel the chair to a spot on the beach for me.

CHALLENGE Sensory issuesThe last thing you need is more stuff to weigh you down but having a portable sensory tool kit in your bag can make life just that little bit easier if your child has sensory issues.

We lOVe THIS SeNSORY TOOl KIT $27.50 FROM SKIll BUIlDeRS

www.skillbuilders.com.au

To enter go to www.sourcekids.com.au/competitions

CHALLENGE My child is a wandererIf your child is a wanderer, consider purchasing a child-tracking device. In case your child becomes lost, it is helpful to have a recent photo and a written description of your child’s special needs(Willsherespondtohername?Willherunawayfromstrangers?).

WELOVETHEMYBUDDYTAG www.mybuddytag.com

CHALLENGE Not toilet trainedHappyNappyisare-usableswimnappywithnoVelcroandnoties, and is eco-friendly and affordable. They are comfortable and re-usable swim pants that minimise the risk of leakage and are Chlorine Resistant and SPF 50+. They come in child, teenage and adult sizes.

We lOVe A HAPPY NAPPY FROM lITTle TOGGS from www.littletoggs.com.au. To enter go to www.sourcekids.com.au/competitions

26 December 2014

The beneFiTS oF

outdoor play areasPlay is essential for all children’s development and a well-designed play area

can help promote physical activity, excitement, social skill development and

behavioural changes, while promoting multi-sensory engagement and positive

behaviour. Some of the activities may prove challenging initially but the benefits

and the fun to be had make it all worthwhile.

December 2014 27

Melbourne : 03 9095 8060Sydney: 02 9833 4333www.awesomeplaygrounds.com.au

facebook.com/awesomeplaygrounds

Enjoy hours of fun and play therapy in your own backyard.

Freestanding Play Equipment Swing Frames

Home TherapyPlay Gyms

Huge range of swing attachments Nest Swing

As Australia’s largest and best children’s play equipment store we provide you with a range of Vestibular and sensory

products which include swinging, spinning, gliding and linear movement items.

Monkey Bars

Swing FramesThe safest trampolinesAlleyOop Double Bounce

swing attachmentsswing attachmentsAdaptive Disable Swing Seat

SwingsChildren with sensory issues will find both their vestibular and proprioceptive systems challenged. There are a number of different types of swings available that can provide different benefits including spatial perception and trunk control.

SandpitsSandpits allow children to enjoy variety of sensory experiences – tactile, vestibular, visual, and proprioceptive. While they can be challenging for children with sensory issues, your child’s OT should have some great suggestions on how to get your child into the sandpit and playing in the sand. Sandpits can offer some fantastic social and communication opportunities.

SlidesSlides provide opportunity for children to experience vestibular stimulation as they move down the slide. Children learn to organise themselves at the top of the slide in order to slide down while sitting or lying on their stomachs, and also problem solve to work out ways to slow down if they feel they are going too fast.

Climbing netClimbing nets provide opportunities to develop upper and lower body strength as well as problem solving and motor planning skills.

Rock wallsRock walls are beneficial for the development of grip and arm strength as well as leg strength. Children are also required to plan and organise their bodies to successfully reach the top of the wall.

RingsRings give children the opportunity to co-ordinate their bodies and develop upper body strength.

Images and some words courtesy of Awesome Playgrounds.

28 December 2014

I love to travel. As a child, I was lucky enough to accompany my parents on a few overseas holidays and the moment I had finished uni, I had my bags packed (including tiara – intrepid backpacker I was not), jumped on a plane and began to explore the world. I had intended on going for a year but almost 17 years later I still haven’t headed back ‘home’. I like to joke with my daughter that ‘mummy is still on holiday’ but the reality is I have settled into a comfortable life in Australia, complete with two beautiful girls and two furry beasts.

i had always imagined i would never stop travelling. that once my children were old enough, they could easily come along. What i didn’t imagine was having a child with special needs, which makes the prospect a lot more challenging. managing our day-to-day life can be difficult and the prospect of doing it away from home is scary.

Our holiday feature is crammed full of tips and tricks to make travelling, whether within australia or internationally, that much easier, with advice from seasoned traveller and blog writer Julie Jones (www.havewheelchairwilltravel.net) as well as two other ordinary families who have managed to make their travelling dreams a reality.

tAKiNg A

holiday with your SPECiAL NEEdS ChiLd

Happy holidays

Planning your tripbefore embarking on your trip, make sure you’ve considered organising the following:

MLAK The Master Locksmith Access Key enables people with disabilities to access public facilities 24/7. The system has been fitted to facilities including elevators at railway stations, toilets in council municipalities and the Liberty Swings in parks across Australia.

MLAKs can be purchased from Master Locksmiths at www.masterlocksmiths.com.au but are restricted to people with a disability. It’s a good idea to get a note from your doctor to take to the Locksmith.

National Public Toilet MapThe National Public Toilet Map shows the location of more than 14,000 public and private public toilet facilities across Australia. Details of toilet facilities can also be found along major travel routes and for shorter journeys as well. Useful information is provided about each toilet, such as location, opening hours, availability of baby change rooms, accessibility for people with disabilities and the details of other nearby toilets. There is also an App available from the App Store.

December 2014 29

When a travel advertisement pops up on television it usually depicts travel as carefree, fun and often spontaneous. It is often hard to identify with these

images if you are a family with someone with a disability or special needs. I know that in the lead up to a holiday I feel anything but carefree. In saying that, our holiday photos show a family with beaming smiles having a great time.

When our son was diagnosed with Cerebral Palsy and a wheelchair became part of our ‘baggage’, I wondered how we would travel. There seemed so much to consider. Even going on a driving holiday two hours from home saw our car fully loaded.

Severaltripslater(includingoverseastravel)Icanreportthatwith planning and research we have had the pleasure and elation of many adventures. And with that we experienced the liberating feeling that comes from achieving something you weren’t sure would be possible.

Through our adventures I have learnt a lot and love sharing my tips. Every family’s needs and interests will vary but here are some general tips:

My top tipIf you are new to travelling, start local. An enjoyable holiday comes from it being a success and starting closer to home can be a good way to learn what is essential to your family when holidaying.

Booking and choosing accommodationI prefer to contact hotels directly to ensure the room I am booking will be suitable for our needs. If you choose to book online or through a travel agent I suggest once the booking is made, you phone the hotel directly to double check all the details. This also ensures the hotel understands your requirements. Large hotel chains often have a central reservations number and special requests can get lost in the system. Accessible rooms vary greatly and even some people’s interpretation of accessible can be misguided. We were once told a room was ‘accessible, but there is just one step’.

Search the hotel’s website for further information. In the USA the hotel websites have detailed information that often includes a

Travel Tips

Companion CardThe Companion Card is a government initiative that gives a person with a disability, who will need life long attendant care support, the ability to receive a second ‘companion’ ticket at no charge at participating venues and on public transport. The ‘companion’ ticket is also exempt from booking fees.

Each state has their own program but all are nationally recognised, so it really is worth getting one before you leave on your holiday. To apply you can download the forms from your state’s government website.

There are 4200 business and organisations across Australia who accept the cards including:

Cultural – Cirque du Soleil, Australian Ballet etc.

Cinemas – Hoyts, Birch Carrol & Coyle, Reading etc.

Sporting events – Australian Grand Prix, NRL, Football, V8Supercarsetc.

Transport and tourist attractions – Whale Watching, Gold Coast Theme Parks.

Go to www.companioncard.gov.au to see the national providers and links to state-based participants.

Happy holidays

Julie Jones from have wheelchair will travel www.havewheelchairwilltravel.net shares her tips on how to travel with a child with special needs.

30 December 2014

are comfortable with the process. If you think your child may find this process overwhelming, I suggest role-playing it with them at home. You could also make a story about it using board maker pictures or photos of you role-playing the scene with them.

Airport/on-board the aircraftArrive at the airport early. You will avoid the worst of the queues and the airline staff are more accommodating if there are not a hundred people behind you frustrated at the wait. At this point you can request seating toward the front of the aircraft and if any seatingisavailablewithmorelegroom(i.e.bulkheadseats).Thisis the time to smile sweetly and ask.

People with limited mobility and those using a wheelchair are first to board the plane and last off. We always have drinks with us(buyorrefillawaterbottleonceyouhaveclearedsecurityoninternationalflights)becauseitisquitealongwaitwhilethewholeplane loads and it can be hot as the air conditioning system isn’t fully operating until take-off.

AttractionsOnce you have decided which sights and attractions you wish to visit, do some research about their accessibility. Somewhere like Disneyland has extensive information on accessibility on their website. Other smaller attractions may require you sending an email or phoning. Often entrances for wheelchairs are not located at the main entrance or some theatres have special seating if you contact them in advance. Research saves a lot of time and frustration once you are at your destination.

TicketsMany attractions offer a free ticket for a carer/attendant, so check for this and make an email enquiry if the information is not available on their website. The Australian Companion Card needs to be produced at most attractions in Australia for a discount. Although the USA does not have a similar system we found that the Companion Card was often accepted as proof of disability and a discount applied.

floor plan of the room’s layout and even the size of the room. This helps us determine how spacious the room will be for the four of us, plus our luggage and wheelchair.

Lastly, don’t assume hotel staff or management know what you need. Ask questions to make sure you know the room will be suitable. If using a wheelchair, specific questions like, “is it ground floor?”,“istherealift?”and“istherearoll-inshower?”willhelpensure you get what you want in a hotel room. There are no dumb questions in this area. It is about being informed and knowing that the hotel will meet your needs or, if need be, you can decide if the compromises are possible for your situation.

Booking flightsWhen booking flights the airline will need to know the dimensions ofyourwheelchair(height,widthandapproximateweight)andthey need to know if it is manual or electric. Having this information available when you phone to make your booking will avoid the need to call back. At this point it is good to let the airline know if you prefer, or need your own wheelchair to the aircraft door.

Many airlines have an upper body torso harness available. This is designed to help support those passengers with a disability who find staying upright difficult without a harness. These must be pre-arranged through the airline’s special handling department. The harnesses can only be used in specific seats on the aircraft as they are anchored via an anchor point on the floor of the aircraft.

Make sure you advise the airline of any dietary requirements and any equipmentyouneedtocarryonboard(wecarrymedicationwhichrequiresaneskyanddryice,andthisneedsairlineclearance).

Preparing for airport security and travelMany children with special needs thrive on routine and therefore travel proves challenging. Preparation can help this process, particularly with situations like airport security. We have found the staff are well trained in dealing with children with special needs and go out of their way to ensure the child and parents

Happy holidays

December 2014 31

Preparing your wheelchair for travelA general service on a wheelchair prior to travel is a good idea. It ensures there are no loose nuts and bolts and that everything is in good working order. We also travel with a basic repair kit that we get from our wheelchair manufacturer.

If you are purchasing a new wheelchair, my best tip is to get as much built-in storage as possible. A zippered pocket under the seat is a great place to store valuables like passports and iPads when travelling between locations. A net storage area underneath is great for jackets and a zipper in the seat back is where I keep my wallet and keys. Although you can use a backpack for these things it is much easier for thieves to steal.

Travel insuranceEven before you book your trip it is a good idea to get a quote for travel insurance as this will give you the cost and also ensure that any pre-existing conditions can be covered. At the very least purchase your travel insurance when you pay for your trip. This should then cover you if you need to cancel your trip due to health problems or other unexpected situations that could arise.

You need to consider the type and amount of insurance you require for your wheelchair. A wheelchair is an expensive item to repair or replace and airlines usually say, “All care but no responsibility”.

Declare any pre-existing medical conditions and ask if you are unsure. I didn’t consider Cerebral Palsy a pre-existing condition. In my mind it is a disability, not an illness but it is considered a pre-existing condition with the insurance companies. We had no problem getting the cover when we applied and it gave me peace of mind to know that we were insured if anything did go wrong.

If you are doing multiple trips in a year consider an annual policy. It saves time and money.

TransportationCar hire – in most major capital cities in Australia and overseas there are specialty car hire companies who have wheelchair accessible vans and vehicles. These are usually more expensive than Hertz, Avis etc. but if that is the type of vehicle you need then factor it into your travel budget. These vehicles are less plentiful so booking well in advance will ensure you secure what you need.

If you are booking a ‘regular’ rental car and need a station wagon or people mover, make sure the reservation’s operator is aware that you are hiring that vehicle to accommodate a wheelchair. Rental companies generally book a particular car and add the clause, ‘or similar’ to your confirmation. They need to understand you need a certain vehicle for a reason.

Ensure that the car rental company’s transfer bus, if there is one, to the car depot is accessible. For example, in a city like Los Angeles, you need to catch a bus to get your rental car.

If you are using a local ground transportation service or shuttle service to your hotel, make contact with them prior to booking to ensure they have an accessible vehicle. Once again, be specific. Many will list that they have an accessible service but when we checked if they could accommodate our son’s wheelchair, which does not fold, they couldn’t.

Although this may seem a daunting list of tips, please don’t be put off. Throughout our journey with a son with special needs, we have found that the fun times we have had as a family helped us become a stronger family unit. It has cemented the relationship between our two children, giving them a close sibling bond. There are lots of tough times but our holidays and weekend outings definitely help our relationships weather those more difficult times.

Happy travels.

32 December 2014

We have been to so many fabulous places camping and the family loves driving and being in the great outdoors. Port lincoln has stunning beaches and Abbey loves water. Port elliot caravan park has an amazing playground and jumping pillow…. Great for sensory needs! Yorke Penisula has lots of secluded little campsites where you can camp away from others without fearing that the children will upset other campers nearby. We always find casual meal areas, preferably with an outdoor area for the children to run around. Places where we can spread out and not be on top of other diners. We never go to busy places – we tend to avoid crowds.

The BesT bIT: The children have such a fabulous time. They absolutely love the caravan… its home away from home and they are stlll so excited every time we go away. They can have all their toys and belongings in their lockers and they have their own bunk beds. We do all the usual fun activities of holidays but at the end of the day go back to our own beds. We can travel around much more and see so many more sights.

The hardesT Part: When people stop and stare because Abbey is making noises to communicate (which sound like shouting to other people but they are her words). When she doesn’t understand in certain situations… i.e. running for the water at the beach as she is so excited. She loves the water, but we cannot relax at the beach. It’s hard work, but worth it. We have to watch her 24/7 because of her level of understanding (to keep her safe and ensure she doesn’t disappear) and she has had over 170 seizures in the last 2 years, so we have to watch her because she could have one at any time (despite being on multiple meds that are not able to control the seizures).

TrAvel TIPS and Advice: Be brave and have a go! Yes it requires an inordinate amount of planning; a lot of inner strength and an extremely thick skin but despite the hard work, the positives that the family and especially the kids get out of it is amazing. We want to extend our ‘special’ kids all the same opportunities that ‘typical’ children have.• Makesuretoplanaheadwithmedications• Beorganisedwithpackingalltheessentialandsnacksand

toys that will help out in a tricky situation.• Takeadeepbreath,andtrytorelax…orlaugh…sometimesit’s

the only way!

Would you do It agAin? Yes, yes, yes! Hard work but priceless memories.

our fAMily conSIsTs of: Simon, Sarah, Abbey (6) and Will (3)

Abbey has a global developmental delay, refractory epilepsy, oculamotor apraxia and is non verbal.

We have done many camping trips. We had a camper trailer and now we have a caravan. The camper trailer took a little too much setting up with Abbeys needs. We needed something simpler but didn’t want to give up the camping lifestyle... now we go glamping!!

how We geT there: Car towing the caravan.

In the car you can meet the needs of your family by driving as far as you need/can, stopping whenever you need… providing drinks/food/entertainment required for a peaceful journey. We manage the journey with lots of snacks, iPads and favourite TV shows on the iPads, activities, breaks and playground stops etc.We stayed in our caravan because it is a known space that when Abbey is tired or overstimulated she can go back to her familiar zone. She absolutely loves it. With our caravan we can also have her seizure mat and monitor set up all the time.

WE HELP WITH ALL SENSORY,

LEARNING, MOTOR AND

DEVELOPMENT ISSUES.

Clinics at Yeerongpilly & Albany Creek

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

Empowering Families + Transforming Lives

Intensive NDT Therapy for babies and children with Cerebral Palsy and other ‘neuromotor challenges’ designed to address the unique and desired goals of each child and the child’s family.

Kathryn Bain, HScD, B App Sci (OT), C/NDT*pw@paediatricworkshops.com.au *Registered BetterStart Provider and HIC Provider

M: 0412 751 741paediatricworkshops.com.au

Happy holidays

Family Profile

December 2014 33

The BesT bIT: Everyone getting what they wanted from the holiday. I was so glad I was brave enough to trust a nanny to look after Archie. It felt like we all got a break.

TrAvel TIPS and Advice: Buy a cheap toaster and plastic cutlery and plates – sometimes toasted sandwiches for dinner or lunch is ok!

Re-arrange the hotel room to suit you.

Try and have a good look at the hotel room layout online before booking. For us we have a lot of safety issues so we need a room without hard floors and sharp edged furniture. It may sound silly but it means Archie can have the freedom to run around the room safely.

If you can afford it, I would always try and book a room with at least one separate bedroom. Because Archie has a daytime sleep it was pretty boring for his brother to have to sit quietly in the hotel room waiting for him to wake up.

When flying have one parent sit beside your child and the other in front – it not only gives one parent a place to be where they can takeabreakandeatameal(mums–makesureyoutaghalfwaythrough)butitalsotakesawaythestressofworryingabouttheperson in front’s seat being kicked the whole trip.

Get a nanny – don’t feel bad that the kids can’t do everything with you. Use the nanny at the times they are sleeping so you can do other things rather than hang out in the hotel room.

Wetookaportablehighchair(theoneswiththeblowupseat andfoldsdowntothesizeofabout30cmby30cm).Itmeant that wherever we went Archie could always be included at the table with us – it was a very busy time so some places ran out of highchairs.

Buy or take some Tupperware containers to keep medication and bottles clean. I usually take some Milton tablets and buy a cheap container so I can wash bottles and syringes etc.

Would you do It agAin? In a heartbeat. The thought of it and lead up were much worse than the actual trip – being prepared for worse case before we left meant that we had covered all bases if issues were to arise and we had a plan if it did happen.

our fAMily conSIsTs of: Terry,Briohny,Jackson(12),Archer(3)

Archie has Holoprosencephaly. Subsequent issues from this are sensory processing issues, developmental delay and other medicalissuesincludingDiabetesInsipidus(doesnothavethehormonewhichtriggersthekidneystoconservewater).

We have travelled quite a lot, by plane, boat and in cars to Hawaii, Fiji, Whitsundays, Gold Coast and Melbourne and a number of road trips within NSW.

We always arrange to have a car seat bought on for Archie to sitonintheplane(andwealwaysbuyhimhisownseat).Inourexperience all airlines have been accommodating. Having the car seat helps so much with the little things - like being able to eat a meal and know that Archie can’t leap out of his seat and knock things over or just being able to stand up and know that he is safe and securely strapped in.

I always let the airlines know that we need the stroller right up to the gate. This makes it so easy when you have to get through security and have time to waste before the flight. Most of them accommodatethis–howeverVirgindidn’tletusdothisonetimeand it was so difficult. Archie is able to walk but has no concept of danger and cannot understand my instructions. This on top of his hyperactivity makes it so hard to just to try and get through security, carry luggage or just buy a cup of coffee.

how We mAnaged the journey To haWAiI: iPad, iPad, iPad!!!!! Archie didn’t sleep the whole nine-hour trip so we had Hi5 playing on repeat. My husband and I slept in shifts – so there was always a parent to care for him but we both got some sleep. To have that break every now and then makes the world of difference.

We also had a homemade deep pressure singlet and some chewies for Archie, which helped with his self-regulation when needing to be sitting down for so long. We also packed lots of snacks.

Family Profile

34 December 2014

“The program was developed over 10 years ago as it was identified that there were no other programs available with specially trained teachers to work with children with special needs.

“Our program works because Swim 4 All provides a caring, predictable environment and teachers who understand the way our children learn. Swim 4 All has fantastic teachers who implement our established teaching plans and resources with amazing results.’’

Some children even progress to squad level programs and go on to compete successfully – Bailey even won the club championship last year. Natalie says that it is priceless to see the reaction of parents when their children swim independently.

“It is very rewarding to see the children progress and develop in confidence,’’ she says.

Swim 4 All was started by swim instructor Natalie Clarke, who was trying to fill a void in the learn-to-swim market for children with special needs.

Her son Bailey, who has Aspergers Syndrome, attended a support group and many of his friends there could not access a facility. And so, Swim 4 All was born.

Having started with just a handful of clients, she now operates a special needs swim program out of three centres across VictoriaforchildrenwitharangeofconditionsincludingAutism,intellectual disability, Downs Syndrome, Cerebral Palsy and ADHD.

Autistic children especially love the water but most do not respond well to regular group swimming classes, putting themselves in danger. “Many autistic children have no fear and/or low impulse control and will therefore enter water without the skills to prevent themselves from drowning,’’ Natalie says.

Individuals | Groups | Parties | Schools | Corporates

LESSONS DELIVERED STATEWIDE IN TASMANIA

•SURF LESSONS •SURF HIRE •SURF TOURS

BOOKINGS ESSENTIAL 0419 324 921

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Kids go SwiMMiNg

hundreds of special needs children and their siblings in victoria are making a splash with a specially designed program.

Proudly supporting parents and carers of children with special needs in Northern Tasmania through learn

to swim, aquatic education and fostering a love of water.

Riverside | George Town | Deloraine

(03) 6327 3910 • www.amstas.com.au

December 2014 35

“Several years later, hearing of the great things Swim 4 All was achieving with special needs swimmers, Monash Special Development School offered Swim 4 All their pool for hire to help challenged children in the Wheelers Hill area.

“With the constant battle for pool space to expand the program, Swim 4 All purchased its own centre in Werribee in 2013.

“Over the Christmas break, when the Werribee Centre closes, Swim 4 All will be building a new disability pool.’’

The Swim 4 Special Needs Foundation is raising money to assist with unique disability friendly elements including ramp access, railing and spa jets.

Any donations can be made directly to the Foundation website: www.swim4specialneeds.org.au or via the Everyday Hero website: www.everydayhero.com.au/charity/view?charity=2449

“Parents report their children do far better in school and other activities when they have gained confidence in their ability to achieve new skills. Seeing the pleasure parents gain from seeing their children succeed in the pool when they struggle with so many challenges in life is wonderful.

“So many parents come back from holidays where there is a hotel pool or a trip to the beach, ecstatic that they have been able to enjoy a regular family activity like other families as their children are happy and safe in the water.’’

So popular has the program become, there has been a rapid expansion of pool space to facilitate demand.

“Swim 4 All began the special needs program from a hired facility in Murrumbeena nearly 10 years ago with just a handful of swimmers,’’ Natalie says.

Special Needs and Disability Splash Shorts

means everyone can enjoy the benefits

of water.

www.littletoggs.com.au 0426 972 914

Kids go SwiMMiNg

•

•

•

•

36 December 2014

The heightened expectations of the holiday system, combined with too many commitments,

sugar with sugar on top, family obligations, financial pressure and a schedule out of whack can easily turn the ‘happiest time of the year’ into a fiasco.

There are specific times when, emotionally, it is harder to manage your special needs child. Christmas is such a special time of the year: movies are made about it, songs are written about it and magazines display an idealised version of what ourChristmasshould(andcould,ifwespendenoughmoneyandstartaChristmastimetableinNovember)looklike.

It can be disappointing when the reality doesn’t live up to the hype for anyone, but if you have a child with special needs, this is a time when the very real images you had in your head, about what your life would look like when you had your own children, are challenged. There can be a very real sadness about the loss of that perfect family Christmas you had always imagined.

The secret to keeping your sanity intact is to be adaptable. It may not be the Christmas of your dreams – but it may be perfectly lovely, anyway.

Prepare your childWrite a social story for your child about all the activities that they can expect in the lead up to Christmas. Include things like the end of year school concert, giving cards to friends and presents to the teachers, being on school holidays, getting out theornamentsanddecoratingthetree,Christmasbaking(andthesmellsthatgowithit),buyingpresents,visitingSanta,Carols,friendsandfamilypoppingby,theChristmas Eve rituals, Santa’s arrival and opening presents etc. etc.

It could also be helpful to use photos and pictures to illustrate the story, so your child knows what to expect visually – especially if your family isn’t well known to your child.

Christmas suRvival guide

You are the caregiver of your special needs child for 365 days

a year. You might not know it all but you have your child in a

reasonable routine, can function with your partner and children

in a manageable chaos and your life doesn’t suck. And then

Christmas arrives...

December 2014 37

SaturdaypriortoChristmasandChannel9airsVisionAustralia’sCarols by Candlelight on Christmas Eve. Pop on your Santa hat, throw down a picnic rug and have a picnic dinner in your lounge room while watching and singing along.

ask for helpPeople want to help. They really, really do. Unfortunately, both asking for help, and trusting someone else to care for your special needs child, is really difficult. Often it is easier to let your family helpyou,sotakeadvantageofhavingthemaround(orstayingwithyou)andletthemhelpyoubylookingafteryourchildrenforyou. Use the time to shop without children, take your children out individuallyona‘date’thatisallaboutthem(welikeamorningteaatthechocolatier,orgoingtothebeach),gotoaChristmasparty,or have a night out with your husband.

Create a quiet spaceMake sure your child has somewhere quiet and just for them if they need to remove themselves from the situation. I like using a fold up tent with a lovely soft blanket, a cuddly and soft pillow pet, and a toy with lights and music. You could also have their iPadoraportableDVDplayerinthere.Useitathome,togetused to it, and then set up the quiet zone when you go to other people’s homes, so your child knows that they can escape to their cubby if they are feeling overwhelmed.

giftsOne of the best parts of the Christmas experience as an adult is watching a child opening, with eagerness, the gift you have carefully chosen for them and declaring it ‘the best present ever!’ Warn your family that this may not be the case with your special needs child.

It is likely that the tree, the gifts, the people and the tangible excitement in the air will overwhelm them. Being expected to open presents could be just way too much. You could ask all present buyers to club together to buy just one big present, so there are less to open, or wrap current favourite toys so there is a familiarfriendinsidethewrapping.MydaughterLOVESsqueezyyoghurt – so Santa leaves a few, unwrapped, in the front of the pile of gifts under the tree and she is more than happy to enjoy them while all the other gifts are unwrapped around her.

FoodPack food that you know your child likes and will eat, and take it with you. This is not a time for food battles. If your child loves Tahini sandwiches then Tahini sandwiches are a perfectly acceptable offering for Christmas dinner. This is definitely something to mention in the family email prior to the day, so you don’t have nana force-feeding your child turkey and plum pudding.

Time for youAmongst the chaos, try really hard to find a moment to breathe and reconnect. A lot of the hype and pressure of the season we create ourselves. Stand outside, with your feet in the grass and your eyes closed and spend a minute thinking of what you are grateful for. Take a walk with your partner. Hug your child. The ‘perfect Christmas’ is not a goal you are hurtling towards, it is the entire journey. So live it. Cherish it. As crazy and adapted as it is. Our beautiful people are only little once.

Create a giant calendar for the wall, separating each day of the holidays into morning, afternoon and evening and fill in each event and activity that is planned so your child can look to see what is coming up.

Christmascomesalongwithallsortsofstrange(albeitdelicious)smells. Try putting cinnamon into your child’s play doh and cleaning your woodwork with some clove oil to breed familiarity while the environment is calm.

Prepare your familyEveryone’s family dynamics are different but unless your entire family is intricately involved in your day-to-day life, they probably don’t know or understand a huge amount about your child’s diagnosis and the ways that may affect their behaviour or ability to cope in a different and overwhelming environment. Aunty Jan might arrive with a bag of brightly coloured lollies and then be shocked by the resultant meltdown or Uncle Pete could bowl in with a big barrel laugh, smelling of cigars and wonder why his nephew is such wimp for bursting into tears when he tackles him onto the couch. Prior to the day, send out an email explaining the diagnosis and what that means for your child, how they can help to make your child more comfortable - and what not to do. Most people will really want to do the ‘right’ thing – they may just not know what that is and be embarrassed to ask.

Try to keep to your routine as much as possibleYour usual term-time wake-up, meal and bed times are what your child is used to and help to create an underlying familiarity when everything else seems unreliably different. While special food is also part of the holiday experience, try to keep sugar, preservatives and colours to a minimum. Tired kids or hyped up kids, are not going to be fun for anyone. There are so many recipes online for delicious treats that are also nourishing, and making them with your children can be a fun holiday activity.

DecoratingThis is very dependent on your situation but this is another area where you can greatly reduce your stress-levels. Spending all day marking your child, trying to ensure both their and the family heirloom baubles stay safe, is not necessary. If your child is overwhelmed by decorations, you don’t need to recreate the cover of Home Beautiful.

If your child is likely to pull everything down, put the glass and delicate baubles away and use plastic, wooden and/or fabric ones instead. If your child is likely to climb the tree and bring the whole lot down on top of them, there are great Christmas tree wall decals you can buy online – or get creative and make one! If your child really can’t handle any decorations at all, but you don’t want your other children to miss out, you can decorate their bedrooms with them.

Just say noYou don’t have to accept every invitation or participate in every activity. That way madness lies. If you know your child hates crowds and loud noises, the community carols event is probably not a good idea. If you don’t want your other children to miss out, Channel 7 airs the Woolworths Carols in the Domain live on the

Christmas suRvival guide

38 December 2014

Proving resources and individualised programs in collaboration with

parents and teachersSchool, home and day-care visits

Therapy support

Ph 1300 132 785www.skillbuilders.com.au

Zooba fitball for kids So much fun they don’t even know they’re exercising, see why parents, kids and therapists love Zooba.

RRP $59.95 www.zooba.net.au

Tap Tap GamesPut the pieces together and create amazing monsters and awesome space creations with this beautifully presented game.

$31.10 www.skillbuilders.com.au

Sinchies PopsUse these awesome Sinchies pops for making icy poles! Simply choose your own healthy ingredients – whizz, pour, freeze and pop it out the top to enjoy!

$9.90 for a pack of 10 with a free filling accessory – www.sinchies.com.au

Little Treasures Soft Body Doll 38cm doll with a soft, cuddly body and closing eyes. She comes with an outfit and accessories.

$39.95 www.windmill.net.au

Senseez Vibrating Pillow Helps soothe and calm the body through vibrations.

$56.50 www.skillbuilders.com.au

Bobux Soft Soles100% leather adorable pre-walkers that are non-toxic and free of artificial colours – so it’s okay if your baby chews on these ones! Available in sizes S, M, l – heaps of colours and patterns available.

$39.95 www.littlebigfeet.com.au

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

So much fun!

Christmas GIfT IDEAS

Bobux Step Up 100% leather shoes designed for littlies taking their first steps. They have a non-slip sole and flexible, allowing your child to develop strength in their feet as they walk.

$59.95 www.littlebigfeet.com.au

December 2014 39

Balance Teeter PopperBuilds core strength, stability, leg strength, balance, coordination, and gross motor skills, not to mention providing a great movement option for those children who are ‘movement seekers’.

$62.50 www.skillbuilders.com.au

EstablishEd for ovEr 30 yEars

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

MElboUrNE 591 Whitehorse road, Mont albert viC 3127 (03) 9830 4336

adElaidE 252 the Parade, Norwood sa 5067 (08) 8332 5262

laUNCEstoN 256 Charles street, launceston tas 7250   (03) 6334 9996

hobart 243 harrington street, hobart tas 7000  (03) 6231 0499

www.windmill.net.au

Bloon Metallic Soft BallStrong, soft and very bouncy! This play ball is ideal for the garden, beach or pool.

$10.95 40cm (other sizes available) www.windmill.net.au

Clip Circuit Electrolab A simple way to introduce children to electronics.

$32.95 www.windmill.net.au

Howdahugs A fantastic option for vestibular input, extra proprioception and postural support – all in one seat. Great for mat time: particularly for kids with SPD, ASDs and ADD.

$89.95 www.skillbuilders.com.au

My First LacingGreat introduction to lacing.

$16.95 www.skillbuilders.com.au

Create and Carry EaselA portable easel with whiteboard and blackboard.

$42.00 www.skillbuilders.com.au

Go in the draw to WIN one of the prizes above at www.sourcekids.com.au/competitions (terms and conditions available on website).

Keter Water Table Great for water and sand play. Includes sand molds and the tops close over to create a flat surface.

$79.95 www.windmill.net.au

• flat feet • hypermobility • toe walking • delayed gross

motor skills• tripping & falling • intoeing • gait assessment

and much more

Brisbane’s only exclusively child focused Podiatry Clinic and Shoe Shop

Feet: www.littlebigfeet.com.au Shoes: www.littlebigshoes.com.auPh 3378 5935 – 6/2069 Moggill Rd, Kenmore

(Parking in Princeton St)

40 December 2014

Siblings may feel angry or resentful about the time and attention their brother or sister requires from parents and others around them, as well as about any additional responsibilities and time they themselves spend contributing to the family. Siblings may also feel embarrassed about their brother or sister’s appearance or behaviour, especially at school and in the community if people comment or stare.

Siblings may also be confused or worried about what is wrong with the child with special needs and may fear that they have done something to cause the child’s disability or any problems within their family or they may fear that they too will become just like their brother or sister.

What kind of behavioural issues could one expect to see?

Following on from the information above, siblings of children with special needs may display challenging behaviour as an expression of their feelings of isolation, worry, fear, stress, or as a cry for attention. This may take the form of, or result in, social withdrawal, social difficulties, anxiety/depression, perfectionistic and pleasing behaviours or ‘acting out’/attention seeking behaviours.

How children react and cope with living with a sibling with special needs will not only depend on their own personality and temperament, but also on their relationship with, and support from, their family, peers, school, and wider community.

How is best to manage them?

It is important that children have accurate information about their sibling’s diagnosis, including dispelling any misconceptions. Furthermore, it is important to be open about one’s own feelings and struggles and to encourage and normalise however the child is feeling.

it could be inferred that children who are already part of the family when the child with special needs is born have their childhood cut short and those who are born afterwards have

no childhood at all.

Depending on the severity of the disability, parents may need to depend on the sibling at times to provide care and assistance in the care of their brother of sister and certainly are often expected to manage anti-social behaviours and ‘unfair’ circumstances.

Time and attention is disproportionately distributed and the sibling has to get used their needs coming after those of their special needs sibling.

We chatted to Psychologist Dr Mickaela Schelleman, Psychologist (TLCPsychology),toseehowparentscanmanagethistrickybalance in the best possible way.

How does having a sibling with special needs typically affect a child?

We know that, whilst providing joy and many positive experiences, living with a child with special needs brings additional stress and challenges for families. This stress and these challenges don’t only apply to parents but also to siblings. Whilst parents are cognitively able to understand and reflect upon the impact of living with a child with special needs, by nature of their age, siblings often struggle to understand and deal with their feelings and reactions.

Specifically, siblings of children with special needs may feel isolated, both from their peers from whom they feel different, and from their brother or sister whom they may not understand or know how to relate to. Their relationship with their parents may also come under strain as parents themselves struggle to cope with the additional challenges of having a child with special needs, including trying to be attentive to, and balance the needs of the entire family.

And then there were two...

Being a sibling of a child with special needs is a unique relationship with many challenges. Siblings undergo similar stresses that parents do, but without the understanding or maturity to deal appropriately with the emotions that may accompany them.

managing SIblINGS

December 2014 41

Keeping the lines of communication open will help to ensure that you can support your child, whatever they are experiencing. If you notice changes in your child’s sleeping, eating, mood, or behaviour, that your child shows less interest in things that they used to enjoy, including spending time with friends, or having trouble at school, seek help from a qualified professional.

How can I ensure that all my children have their needs met?

No parent can meet all the needs of the family at the one time, particularly when one child requires a high level of attention, time and support. Talking with your child about their feelings and needs will help you identify strategies and provide additional support if needed. Building and nurturing relationships with other siblings, extended family, peers, and the community is oftennecessarytohelpmeetallofyourchildren'sneeds,as well as your own.

DrMickaelaSchelleman(SeniorPsychologist/Director,TLCPsychology)specialisesinservicesforhighdevelopmental,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.

How to explain a sibling’s diagnosis with your other children age appropriately:

• Beclearandconciseandhonest,usingageappropriatelanguage and concepts.

• Providetheinformationnecessarytoconveythe‘facts’as they pertain to the siblings life, e.g. what the child with special needs requires and why e.g. any equipment or supporting aides, modes of communication, environmental changes, or other support, and discuss any altered appearance or behaviours displayed.

• Whilstyouwanttoshowcompassionandunderstanding for everyone involved, don’t be apologetic for the sibling’s diagnosis or their needs.

• Askyourchildwhatshethinkshersibling’sdiagnosismeans and ensure that her understanding is accurate.

• Offerwaysthatyourchildcanhelpifshechoosesto,making it clear that it is an option.

• Provideanopportunityforyourchildtomeetpeers who have a sibling with the same diagnosis.

• Conveytheimportanceofyourrelationshipwithyourchild, regardless of their sibling’s needs.

• Ensurethatyourchildknowsthatthereareno‘correct’feelings or thoughts in response to their siblings diagnosis or needs and that you are always willing to talk with them.

How to help your child have the language and confidence to share the diagnosis with their friends:

• Ensurethatyourchildhasanaccurateunderstanding of their sibling’s diagnosis.

• Speakwithyourchildaboutwhattheywanttheirfriends to know.

- Role play the conversation with your child, including answering questions their friends may ask.

42 December 2014

Our biggest challenge is:

I think as a family we have adjusted pretty well, we all work together in helping each other. Brooklyn likes to be occupied all the time. She loves to be outside walking around in her walking frame, sitting in her little pool playing with her toys and she loves to go on bike rides in her adaptive bike. As a family we did the 5km Mater Little Miracles fun run and Brooklyn completed the whole 5km in her adaptive bike. I love how Shenae and Blake are happy to be involved in all aspects of Brooklyn’s life.

Best parenting tip:

BePOSITIVE!Keepingapositivemindhelpspositivethingshappen. Advocate and be proactive as much as you can because you know your child best. I find my best tool is my diary – being organised and knowing what appointments you have and where, because there are a lot.

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

Never be afraid to ask for help. If you or your child are not happy with a doctor or therapist who they are being treated by, change until you find one you are both comfortable with.

And the most annoying/unhelpful advice

(there’s always one):

To be completely honest, I don’t think we have had any negative advice from anyone. Brooklyn puts a smile on everyone’s face she meets.

This journey has taught us…

That there are some truly amazing people in this world, all fighting their own battles, who would still do anything to help if you asked.

We would never manage without:

The love and support we have through family, friends, and all of Brooklyn’s supporters that support her every day through herFacebookPage(Brooklyn’sQuest).

Products we love:

Bath toys/accessories: Brooklyn uses the Flamingo bath/shower/toilet chair in the bath/shower. In the bath Brooklyn is happy playing with any bath toys we can find.

Bed: Brooklyn still sleeps in her baby crib.

Books: Brooklyn has lots of books but prefers interactive stories on her iPad.

Our family consists of:

Dad(Dennis),Mum(Shelly),Bigsister(Shenae11),Bigbrother(Blake9)andourlittleSuperHero(Brooklyn3)

We live:

Redlands, Queensland

Our child is dealing with the following

disabilities:

Disorder/syndrome: Brooklyn has Spastic Quadriplegic Cerebral Palsy, which was caused by an Auto-recessive RTTN Mutation. This mutation resulted in Brooklyn being born with a brain malformation called bilateral fronto/parietal/occipital Polymicrogyria, Microcephaly, and Epilepsy. This diagnosis does not hold Brooklyn back, she is a very determined little girl with lots of beautiful smiles. Brooklyn is the fifth in the world to be diagnosed with this mutation through the Next Generation Sequencing DNA test.

How we manage that:

In the beginning it was hard not knowing what had caused Brooklyn’s brain malformation and the doctors we were seeing at the time had no idea what Brooklyn’s prognosis would be. But through research and determination to help Brooklyn the best we can, we found Dr David Coman. He has helped us a great deal in giving us direction through testing and diagnosis. We now know we do not have to worry too much and we can continue our journey to help Brooklyn achieve independence through lots of therapy. Brooklyn has great therapists that help her and she loves her therapy. We have been so lucky to have so much support from family and friends. Now we just take it one day at a time, work hard, and hope for the best outcome.

Our favourite place to go as a family is:

We love going to the beach on the South Coast. Although we don’t get to go much we enjoy our time down there. Last time we stayed at Palm Beach and thoroughly enjoyed it.

Our favourite activity is:

We all have our separate activities that we enjoy doing. Brooklyn is swimming, and currently she is doing two swimming lessons per week at our local YMCA. Brooklyn relaxes so much in the water and it is very therapeutic for her. Shenae loves to dance and does hip hop at FAD. Blake plays soccer and likes to play defender. Dad loves to go fishing when he gets the chance and I like to try and fit in one session of yoga per week.

profile thE merz family

December 2014 43

Pram/stroller/wheelchair: At the moment we are still using a baby stroller, but have ordered a Bingo Revolution Buggy for better posture control.

Standing frame/walking frame: Brooklyn uses a Buddy Roamer for both standing and walking.

Toys: Interactive toys are the best. She also has lots of baby dolls and is a great mummy to them using imaginative play.

People (or businesses) we love:

Dentist: TFI Dentistry. Brooklyn loves the fairies!

Dietician/Nutritionist: CP Health

Occupational Therapist: Fiona Canny at Optimum Movement and CP League

Paediatrician: Associate Professor David Coman

Physiotherapist: CP Health and CP League

Restaurant: Hogs Breath

Speech Pathologist: CP League

Chiropractor: Natessa Henville, who practices in functional neurology – Wellness on Wellington

Orthotist: Paul Stopforth

Crockery: We use shallow bowls as this makes it easier for Brooklyn to self-feed.

Cutlery: Brooklyn has a bent spoon for self-feeding.

Drinking bottles/cups: Non-spill drinking cups with straws.

Orthotics: Brooklyn currently wears solid AFO’s with a sole.

At Optimum Movement we believe therapy should be fun. That’s why our friendly, experienced and enthusiastic therapists use play-based therapy to assist your child to achieve their goals. Our sessions are client-centred, goal-directed and evidence-based. We also hold a special interest in helping children with cerebral palsy and other neurological conditions.

Clinics at Ormiston and Coorparoo QLD (07) 3821 3399 optimummovement.com

44 December 2014

What’s on? Calendar december3International Day of People with a DisabilityThis important day raises public awareness, understanding and acceptance of people with disability and celebrates the achievements and contributions of people with disability. www.idpwd.com.au

3Walk With me PerthPerth will be holding a number of Dick Smith Walk With Me events across the state to raise money for disability services. Check their website for locations. www.walkwithme.org.au

5International Volunteer DayRecognising volunteers across the globe that give their time, energy and efforts to help others. www.volunteeringaustralia.org

7Santa Fun run•BundabergQLD•NewcastleNSW•SydneyNSW •CanberraACT•PerthWA

24Carols by Candlelight Sidney Myer Music Bowl

25

January1New Years Day

26 Australia Day

31Sydney Morning Herald Sun RunSupport your charity and take part in the 1km, 2km or 9km course. www.sunrun.com.au

Merry Christmas

Are you our next Business Partner?Business opportunities are now available for those in Victoria and New South Wales to become a Source Kids Business Partner.

For more information phone 1300 882 370

December 2014 45

20World Harmony DayReminding people across the world not to take peace and harmony for granted. www.worldharmonyday.com

28 Rare Disease DayRaising awareness among the public and decision-makers about rare diseases and their impact on patients’ lives. www.rarediseaseday.org

28The Variety CycleStarting in Sydney and finishing in Hobart, this 15 day cycle is an epic ride to help Aussie kids be kids. Take part in two days or the entire 15 and help raise much needed money for kids across Australia. www.thevarietycycle.com.au

februaryInternational CHD Awareness MonthHeart Kids aims to raise awareness for all aspects of children’s heart disease. www.heartkids.org.au

15cupid’s undie runThis fundraiser is an annual event held by the Children’s Tumour Foundation of Australia to raise funds to find treatments for neurofibromatosis.HeldonValentinesDay,thisfuneventwill be held in Sydney, Gold Coast and Melbourne. www.cupidsundierun.com.au

18International Asperger’s DayThis day highlights the significance of Asperger Syndrome for both society and individuals. www.asperger.asn.au

19Super Boss DayThis event sees bosses be a hero for a day by dressing as a superhero to raise funds for children with heart disease and their families. Bosses can nominate themselves or why not dob them in! www.superbossday.org.au Next issue out

1 March 2015

46 December 2014

aidS and equiPmenT

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

cloThinG and acceSSorieS

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

healTh and nuTriTion

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

SPorT and recreaTion

Aquatic Management Services Tasmania Eden Street Riverside TAS 03 6327 3910 www.amstas.com.auAwesome Playgrounds VIC NSW & SA 03 9095 8060 www.awesomeplaygrounds.com.auBody Cycles PO Box 2082 Hackham SA 08 8377 0399 www.bodycyclesaustralia.com.au Coastrider 461 Clifton Beach Road Clifton Beach TAS 0419 324 921 www.coastrider.com.au

SuPPorT ServiceS

Angelman Syndrome Association PO Box 554 Sutherland NSW 02 8521 7463 www.angelmansyndrome.orgARC Disability Services Inc 92 Little Street Manunda QLD 07 4046 3600 www.arcinc.org.auAssociation of Genetic Support Australasia 66 Albion Street Surry Hills NSW 02 9211 1462 www.agsa-geneticsupport.org.auAustralian Kabuki Syndrome Association Inc 13 Lockwood Road Erindale SA www.kabukisyndromeassoc.com.auAustralian Leukodystrophy Support Group PO Box 2550 Mount Waverley VIC 1800 141 400 www.alds.org.auAustralian Mitochondrial Disease Foundation Suite 4, Level 69, 13 Young Street Sydney NSW 1300 977 180 www.amdf.org.auAutism Awareness Australia PO Box 288 Seaforth NSW 02 9904 8700 www.autismawareness.com.au Autism Spectrum Australia (ASPECT) 1800 277 328 www.autismspectrum.org.auAutism Tasmania PO Box 514 Moonah TAS 03 6278 9985 www.autismtas.org.auBeyond Blue PO Box 6100 Hawthorn West VIC 1300 224 636 www.beyondblue.org.auCARA 98 Woodville Road Woodville SA 08 8347 4588 www.cara.org.au Cerebral Palsy Australia Level 39, 259 George Street Sydney NSW 02 8259 7725 www.cpaustralia.com.au Cerebral Palsy League 55 Oxlade Drive New Farm QLD 1800 272 753 www.cpl.org.au CHARGE Syndrome PO Box 91 Glenfield NSW 02 9605 8475 www.chargesyndrome.org.au Cornelia De Lange Syndrome Association (Australasia) Inc

PO Box 20 Putney NSW 02 9809 0287 www.cdlsaus.org

Cri Du Chat Support Group of Australia 104 Yarralumla Drive Langwarrin 03 9775 9962 www.criduchat.asn.auDeaf Australia PO Box 1083 Stafford QLD 07 3357 8277 www.deafau.org.au Deaf Children Australia PO Box 6466 St Kilda Road Central VIC 1800 645 916 www.deafchildrenaustralia.org.au Down Syndrome Australia 219 Napier Street Fitzroy VIC 1300 658 873 www.downsyndrome.org.au Epilepsy Australia 20 Charrington Court Baulkham Hills NSW 1300 852 853 www.epilepsyaustralia.net Foundation for Angelman Syndrome Therapeutics Australia

PO Box 248 Salisbury QLD 1300 078 108 www.cureangelman.org.au

Hummingbirds 179 Dart Street Redland Bay QLD 0412 363 856 www.hummingbirdseies.com Langford Support Services PO Box 717 Moonah TAS 03 6228 9099 www.langford.org.auLearning Difficulties Coalition PO Box 140 Westmead NSW 02 9806 9960 www.ldc.org.au Lifeline PO Box 173 Deakin ACT 13 11 14 www.lifeline.org.auLions Club Australia 31–33 Denison Street Newcastle West NSW 02 4940 8033 www.lionsclub.com.au Mamre Association Inc 40 Finsbury Street Newmarket QLD 07 3622 1222 www.mamre.org.au Prader-Willi Syndrome Association VIC 0451 797 284 www.pws.asn.au

DIrECTOry

December 2014 47

Rare Voices Australia Ltd Suite 2, 3 The Postern Castlecrag NSW 02 9967 5884 www.rarevoices.org.au Rett Syndrome PO Box 855 West Perth WA 08 9489 7790 Royal Far West 19-21 South Steyne Manly NSW 02 8966 8500 www.royalfarwest.org.auSAKKS – Supporting Aussie Kids with Kabuki Syndrome

PO Box 318 Rundle Mall SA 0422 608 858 www.sakks.org

Spina Bifida Foundation Victoria Level 4, Ross House, 247 Flinders Lane Melbourne VIC

03 9663 0075 www.sbfv.org.au

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

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

TheraPy ProviderS

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

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

6 Ambleside Street West End QLD 0481 121 844 www.insynckidsot.com

Kids Matters OT 2/747 Fairfield Road Yeerongpilly QLD 1300 136 596 www.kidsmatters.com.auKids OT Suite 13, Level 1, Forestway Shopping Centre Frenchs

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

KidsRISE Level 1/490 High Street Northcote VIC 0419 133 895 www.kidsrise.com.auMontrose Access Inc 54 Consort Street Corinda QLD 07 3379 9200 www.montroseaccess.org.auM.O.T.A. Melbourne Occupational Therapy Associates

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

Movement Solutions Shop 1/26 Eva Street Coorparoo QLD 07 3324 2490 www.movementsolutions.com.auNacre Consulting 8 Steele Street South Caulfield VIC 0448 316 319 www.nacre.com.auNorthcott Disability Services 1 Fennell Street North Parramatta NSW 02 9890 0100 www.northcott.com.auNovita Children’s Services Days Road Regency Park SA 08 8243 8243 www.novita.org.auOCC Therapy PO Box 118 Kenmore QLD 07 3378 9543 www.occtherapy.com.auOccupational Therapy Helping Children 22 Marinna Road Elanora Heights NSW 02 9913 3823 www.occupationaltherapy.com.auOptimum Movement 11/116 Wellington Street Ormiston QLD 07 3821 3399Paediatric Physiotherapy Centre Kells House, 87 Buckley Street Moonee Ponds VIC 03 9917 2884 www.paediatricphysiotherapycentre.comPaediatric Therapy and Workshops PO Box 1478 Geelong VIC 0412 751 741 www.paediatricworkshops.com.auRocky Bay Inc 60 McCabe Street Mossman Park WA 08 9383 5111 www.rockybay.org.au Scope Victoria 830 Whitehorse Road Box Hill VIC 03 9843 3000 www.scopevic.org.au Sense Ability Unit 1/14 Clare Mace Crescent Berkeley Vale 02 4389 1812 www.senseability.com.au Small Talk Speech Therapy 22 Brunker Rd Broadmeadow NSW 1300 651 704 www.smalltalkspeechtherapy.com.auSpeech Pathology Tasmania 110 Elizabeth Street Hobart TAS 03 6234 5717 www.spt.com.au Speech Teach 07 3324 1114 www.speechteach.com.au Splash Occupational Therapy Wyndham Private Medical Centre, Level 1, Allied Health

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

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

ToyS and reSourceS

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

48 December 2014

It is hard to take a good picture of any child, but this can be even more difficult when your child has special needs. We asked Occupational Therapist Debbie Hopper to share her tips on getting some good snaps:

1. Use motor drive on your camera – it will capture that special moment when they are the cutest.

2. Use a waterproof camera or life proof case. You can be ‘in the moment’ and not worry about water or drops.

3. Don’t try to force a photo.

4. Give your camera to another child and ask if they can take photos. Make it a game between kids.

5. Get close and be subtle.

6. Use the zoom function from a distance.

7. Shoot lots of photos as you will get a few great ones. This is what professional photographers do!

8. A flash might be too much for kids who are oversensitive. Try and limit the flash or have a longer exposure.

9. Ask a grandparent, friend or neighbour to take photos or take them to Santa Photos. One year we tried with no luck, but our neighbour took him and got some great snaps!

10. As a family, set up a dropbox or icloud folder that all can share photos they take.

Debbie Hopper is an Occupational Therapist who is passionate about helping children with sensory processing difficulties and making life easier for children, parents and teachers. She provides information and resources at www.lifeskills4kids.com.au and www.abilitations.com.au.

Top 10 Tips how to make taking photos of your special needs child easier.

Are you our next Business Partner?business opportunities are now available for those in Victoria and New South Wales to become a Source Kids business Partner.

Contact Source Kids on 1300 882 370 for more information

December 2014 49

Apps, Books, Blogs & websites

love We

APP

National public Toilet Map AppFREE on iTunes

The National Public Toilet Map shows the location of more than 14,000 public and private public toilet facilities across Australia. Useful information is provided about each toilet, such as location, opening hours, availability of baby change rooms, accessibility for people with disabilities and the details of other nearby toilets.

BOOK

play Therapy in the Outdoors Taking Play Therapy out of the Playroom and into Natural Environments

By Alison Chown

Championing the therapeutic power of nature, this book explores why outdoor play therapy offers children more than being confined to a playroom and how practice can be moved into the natural environment in a safe and ethical way.

WIN one of two copies, enter online at www.sourcekids.com.au/competitions

BLOG

havewheelchairwilltravel.netJulie Jones has a love for travel and a son with special needs. Shehasmanagedtocombinethetwoand(withherhusband anddaughter,too)hashadsomefantasticholidays.Shewrites about the experience and provides lots of tips and advice.

WEBSITE

additivefreepantry.comA website full of great, practical information that will help you and your family make positive choices in the food that you eat.

who have a child in the early years before school.

These workshops will help you to:

• learnmoreabouttheservicesandsupportsavailable

to you and your child

• understandhowCommonwealthfundingsuchasBetter

Start or NDIS works

• meetotherparentswhohavesimilarexperiencestoyou

• buildconfidenceanddeveloppositivestrategies

The workshops are being run across Australia, in capital cities

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

workshops by visiting the website betterstartearlydays.net.au

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?

Doesyourchildhave:•Cerebralpalsy?•Downsyndrome?

•FragileXsyndrome?•Amoderateorgreatervisionor

hearingimpairment(includingdeafblindness)?•Oroneof

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.

You can attend FREE one-day workshops especially designed

for you. The Better Start Early Days workshops are for parents

This program is funded by the Australian Government Department of Social Services. It is run by the First Step Alliance: Cerebral Palsy Australia,

DeafChildrenAustralia,DownSyndromeAustralia,FragileXAssociationofAustraliaandVisionAustralia.