Source Kids Issue 3 December 2014 by Source Kids

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Issue 1 April 2014 Issue 3 â&#x20AC;&#x201C; December 2014

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

Christmas survival guide and gift ideas Taking a holiday with your special needs child Managing siblings

Fragile X Syndrome explained

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December 2014

CONTENTS

Features 3 8 10 14

International Day of People with Disability Advocating for your child in a medical minefield Overland Jack All about nutrition Making health work for your kids Helping children to eat A word about nutrition Recipes by Pete Evans

20 22 24 26 28 34 36 38 40

Fragile X Syndrome Medical Marijuana Fun in the sun The benefits of outdoor play areas Taking a holiday with your special needs child Kids go swimming Christmas survival guide Christmas gift ideas Managing siblings

Regulars 2 4 23 42 44 46 48 49

Welcome Product review – bikes and trikes Product review – safe surrounds bed Family profile – the Merz family What’s on calendar Directory Top 10 tips – taking photos Apps, books, blogs and websites

December 2014

Welcome

The Team

to Source Kids

As 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!

Emma Price Publisher emma@sourcekids.com.au

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

Rachel Williams Editorial editor@sourcekids.com.au

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

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

Karen Anderson Graphic Design info@sourcekids.com.au

Published By Marketing Co PO Box 5279, Launceston TAS 7250 Phone: 1300 882 370 ABN: 66 434 598 812 Web: www.sourcekids.com.au Editorial Contributors Marie-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. Distribution Source Kids is distributed through therapy centres, hospitals, paediatricians, special needs schools and early intervention centres. For distribution enquiries please contact info@sourcekids.com.au

December 2014

or 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.

“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.

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

isaster risk reduction and emergency responses, involving D people with disability in planning and response;

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.

•

reating enabling working environments – assistive supports C can be the difference between can and cannot; and

•

Disability inclusive sustainable development goals.

“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.

“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 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.

December 2014

Product Review

bikes and trikes 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 coordination 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.

Movement/ vestibular input

Our 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.

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 coordination 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.

Visual

Auditory

Developing coordination and motor planning skills

Being 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.

Bike 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.

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.

December 2014

• P ractise on a balance bike (a bike with no pedals). This will give lots of vestibular/movement information and they will feel safer being able to stop with their feet • Ride with your child on a tag-a-long bike behind an adult's bike. They will enjoy going longer distances, and they can practise pedaling without worrying about balancing. • Try trainer wheels while they develop sitting and balance skills. • R emember that it is easier to balance while the bike is moving fast. Give yourself a workout – running beside your child with your hand on their back to help them balance (so they feel safer) will give quicker success than walking beside a child and assisting. • I f a two wheeled bike is too difficult to master, there are many options these days for tricycles (even for older children) which are 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 Cycles Australian 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 Edge The 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 • • • • •

Adjustable handle bars Chain guard Front locking handbrake Choice of saddles Australian made frame

Providing a range of standard and therapeutic 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

• Powder coated frame • Available in 12", 16", 20" 24" and 24" geared sizes • Colours – purple, blue, red, green

December 2014

Freedom Concepts Discovery and Adventurer series DCP mini/12/16 and AS 2000 Find your freedom From 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 •

Stable three-wheel design

•

djustable handlebars that can move completely out of the A way for easy unobstructed on/off transfers

•

Direct drive and low gear ratios that make pedalling easy for a beginner, yet challenging for an aggressive rider

•

elcro straps to keep feet on the pedals and optional V supporting footplates (adjustable neoprene, or moulded ABS plastic)

•

ocking hand brake mechanisms for easy mounting and L dismounting

•

Quick release bolts on all adjustable components

•

Powder baked paint ensures durability, years of good looks

•

ptional rear steering system available that allows the O caregiver 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

•

Optional quick release wheels

•

Optional rear basket platform

•

iPod/iPad holders available

•

Optional velcro gloves

•

ptional seven-speed gearing for easy or challenging O pedalling selection

•

Optional hand pedals

• Features an adjustable seat in low back or high back styles complete with safety belt(s) • The unique crank and sprocket that can be adjusted in all directions to accommodate different hip to foot positions • Discreet assistance handle so the rider can learn to ride and stop with a little help • Independently adjustable handlebars and telescopic posts move up, down, or forward to meet the special needs of the riders (not available in 16” model)

DCP mini

DCP 12

DCP 16

AS 2000

December 2014

KMX K-3 and Kompact How 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. The great thing about the KMX (especially for kids) is that they can ride something that looks cool and that every other child would • Great for people of all abilities due to want. The recumbents are currently only low centre of gravity and high stability. available through the UK distributor’s website • KMX bucket seat providing but we have heard first hand that they are support and comfort great to deal with. www.kmxkarts.com

• Excellent handling • Quality construction • Very simple and quick assembly • Very robust and low maintenance

Comparison chart 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

12" and 16" – 65cm 71cm 20" and 24" – 70cm

70cm

Weight

18kg

20kg

29kg

Starting at 15kgs depending on accessories required

18.5kg

Wheel size

12inch

16inch

20inch

12", 16", 20" and 24" 16" rear mag wheels, 12" front mag wheels

Inseam size*

15.24-33cm

25.4-50.8cm

50.8-66cm

58.4cm ++

starting from 35cm

X seam size† Will suit age^

2-5yrs

5-9yrs

Up to 13yrs

Adult

Max load

27kg

56.5kg

68kg

102.5kg

Price

From $5200 – $6000 plus price for optional extras

ages 2 to adult

15.7kg

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

63cm-34.5cm

82-105cm

5-10yrs

10-16yrs

110 kilos

65kg

75kg

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.

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

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

December 2014

Advocating for your child in a

medical minefield words | Dr David Coman

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

CONSULTING 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

There are no silly questions It’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 coordination Many 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

Maximise your child’s physical potential Experienced managers of children with mobility issues, developmental delay or musculoskeletal and orthopaedic conditions. We focus on family centred practice and use commonsense and empathy when caring for our clients. Collaborative goal setting is an integral part of our service. •Equipment & orthotic prescription •Fully-equipped rooms •Gym •Exercise and circuit classes •Hydrotherapy •Home & school visits

(07) 3324 2490 movementsolutions.com.au

December 2014

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

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

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.

Advocacy

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

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 family Chronic 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 Board Member, Rare Voices Australia – www.rarevoices.org.au, www.facebook.com/RareVoicesAustralia

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

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

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

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

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

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

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

www.stgiles.org.au

December 2014

OverlandJack Tasmania’s world-renowned Overland Track will form the backdrop for a special fundraiser for an extra special little boy.

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

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.

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

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 the 65km trek in Tasmania’s central highlands in April next year. ‘‘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 speciallydesigned back pack throughout the six-day journey. Some members of the group, including Chris’s firefighter

‘‘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.

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 a 600km paddle from Launceston to Hobart, raising $70,000 for 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.

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

Phone 0412 363 856

www.hummingbirdseies.com

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

December 2014

Nothing compares to a smile!

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.

Walking aids include the Mustang and Crocodile

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

Standing aids such as the Caribou and Rabbit

Bathroom products such as the Manatee, Flamingo and Swan

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

Specialists in technic al aids for childr en

December 2014

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

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

Specialists in technic al aids for childr en

December 2014

Good nutrition

All About

Nutrition I 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.

December 2014

Making health work for your kids Words | Heidi Hosking, Speech Pathologist and Health Coach

We are what we eat. Yes, research is now proving more and more that this is true. If we all focussed on becoming ‘nutritarians’ (eating foods only highest in nutrients, that suit our bioindividuality) and avoiding inflammation, our children would be healthier 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 children Inflammation – 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 (or candida/yeast overgrowth) – is another pandemic issue 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: • As a baby – cradle cap, thrush, nappy rash, eczema • A s a child – anxiety/worry, asthma, ASD, behavioural issues, chronic ear infections, constipation/diarrhoea, cracks in lip corners, craving for carbs and sugar, gluten intolerance, sinusitis, sleep issues, spaciness • A s an adult – more autoimmune disorders, Alzheimer’s, rheumatoid arthritis, diabetes, obesity, infertility, OCD

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.

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

Inflammation of the gut is • food additives linked to eczema, constipation/ (all colours, numbers and other words you don’t recognise) 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 (Sequential Oral Sensory) feeding program’ with your local Speech Pathologist, Occupational Therapist or Psychologist is a great way to get more help.

December 2014

Helping children to eat Once your child is managing a soft diet (such as sandwiches or cooked vegetables and fruit pieces), take notice 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 that require substantial chewing (such as meat), mixed textures (such as lumpy soups, pasta/rice dishes or even cereal that has not gone soggy) or tiny pieces (such as sultanas) which require even more tongue coordination. Instead, help your child to learn to move their tongue by letting them practise with either a soft NUK brush (found in chemists or supermarket) or a stick of hard food (that your child cannot bite large pieces off) 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 inflammation Sugar – 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, cellophane noodles (mung bean vermicelli), Sakata plain rice crackers (only type without MSG), organic corn thins, coconut flour, tapioca flour, almond meal, San Remo gluten free pasta, gluten free breads (check for preservative 282). Dairy – tahini (sesame seed spread), organic almonds and dark greens in pesto or smoothies for calcium substitutes (you may also need a calcium supplement). Coconut yoghurt (simple to make your own), rice/ coconut/almond milk, coconut oil for butter.

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 types of foods (and avoiding all irritating foods – see info box) your child should not struggle with weight, 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 (gradually introduce in smoothies or kale chips), cauliflower, cabbage, broccoli and herbs. This may 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 coldpressed 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. Organic grass-fed meat with some fat (grass-fed fat means Omega 3 oils), fish oil and eggs are good sources. 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.

December 2014

Good nutrition

A word about nutrition Words | Pete Evans, Chef and Nutritionist

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, nutrition and the concept of food as medicine (in an excerpt taken from: 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.

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.

NUTRITIOUS • ORGANIC Little Munchkins Toddler Milk Dairy free, gluten free and soy free

• Allergy free • Supports restful sleep • Easily digested • Great for fussy eaters

natureshappiness.com.au

December 2014

Good Nutrition

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 sauce 2 tablespoons coconut oil or ghee* 2 garlic cloves, thinly sliced 500 g (2 cups) canned crushed tomatoes 8 basil leaves, chopped

vegetable Spaghetti 3 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

Spaghetti and Meatballs To 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 180Â°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 20â&#x20AC;&#x201C;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.

December 2014

Good Nutrition

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

TIP

To sterilise your jam jars, wash them in hot, soapy water and run them through a hot rinse cycle in your dishwasher. (If you don’t have a dishwasher, boil the jars and lids in a large pot on the stove for 10 minutes, then place them on a tray in a 150ºC oven for 10 minutes, or until dry.)

Blueberry and chia ice cream To 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 aside to cool. Pour the jam into a 750 ml sterilised jar (see left for instructions), seal and refrigerate 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.

December 2014

Fragile X syndrome: Why getting a diagnosis is

SO important 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. The Fragile X Association of Australia (FXAA) is attempting to change that, by shining a spotlight on the syndrome, which is caused by the expansion or lengthening of the Fragile X Mental Retardation (FMR1) gene on the X chromosome - known as a gene mutation. One in 3600 males and between one in 4000 – 6000 females 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 the potential to produce a child with Fragile X Syndrome”, she explains. 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 many more options now with IVF such as genetic screening prior to 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.

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 organisations to fund our staff and services.” The Association funds 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 and learning about FXS,” explains Wendy. “We also employ a counsellor 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.’’

Maximise your child’s ability to

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

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

December 2014

Jimmy Jones 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.’’

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 share a family’s story.”

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 % of children with Fragile X Syndrome will also have an accompanying 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. • T here is no single presentation for children with Fragile X Syndrome. It occurs in both males and females but males are more frequently and generally more severely affected than females.

• F ragile X Syndrome is a lifelong condition that causes intellectual disability, learning difficulties and speech and language delay. • I t also causes a number of behavioural and emotional problems, such as social anxiety, avoidance of eye contact, ADHD, mood instability, aggression and at times, withdrawal from social interaction. • H owever, people with Fragile X also have very real 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.

December 2014

Medical marijuana momentum is in overdrive in Australia.

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’s Council of Australian Governments (COAG) meeting. It followed a New South Wales (NSW) Government decision to approve a clinical trial for medical cannabis, which the Victorian and Tasmanian Premiers have agreed to support and possibly allow the trials to expand to their jurisdictions.

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!’’

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 family in Victoria who required access to cannabis oil for the treatment 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.

December 2014

Product Review

Safe Surrounds

Bed

hen 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.

hat 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 middleof-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.

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

Safe Surround Beds Take the nightmare out of night time!

SUPERIOR ENVIRONMENT FOR CHILDREN WITH SPECIAL NEEDS Designed to allow the child to be safe and secure in a sturdy bed Built extremely stable, designed for both ambulatory and non-ambulatory children. Provides a safe environment to sleep and play, and protects the child from harming themselves. Options available to meet your child’s medical, physical and behavioural needs. Discover peace of mind!

SAFE SURROUND PLUS For Space and Safety

Delivery & Set-up Australia wide!

SAFE SURROUND GENIE Specialist Care

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 made for equipment funding through government bodies (however not all states will contribute for this). Charities are normally able to contribute the bulk of the funding. Medifab is also able to help brainstorm funding options for these beds in your area.

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

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

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

December 2014

Fun

sun in the

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

Anxiety

When 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 special needs is a huge burden (as much as we love them) and it is certainly not a sign that you are ‘weak’.

CHALLENGE

Getting ready to go

I 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.

CHALLENGE

Sunblock/sun safety

Apply 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 absorbent free sunblock (we use Sun Sense Sensitive) seems to work 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 still

I’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.

We love the SENSEEZ CUSHION $56.50 FROM SKILL BUILDERS www.skillbuilders.com.au To enter go to www.sourcekids.com.au/ competitions

December 2014

CHALLENGE

Actually getting on to the beach

This 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. The beach we go to (Noosa) has one that was donated by the community. The lifesavers will bring it over to the car and then wheel the chair to a spot on the beach for me.

CHALLENGE

Sensory issues

The 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.

CHALLENGE

Staying hydrated

Some quick holiday hydration tips thanks to Hydralyte

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.

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 (or not drinking).

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.

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.

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?

WE LOVE THIS SENSORY TOOL KIT $27.50 FROM SKILL BUILDERS www.skillbuilders.com.au To enter go to www.sourcekids.com.au/competitions

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:

CHALLENGE

My child is a wanderer

If 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 (Will she respond to her name? Will he run away from strangers?). WE LOVE THE MY BUDDY TAG www.mybuddytag.com

CHALLENGE

Not toilet trained

Happy Nappy is a re-usable swim nappy with no Velcro and no ties, 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.

0-6 months: 0.7L/day (from breast milk or formula). 7-12 months: 0.8L/day (from breast milk or formula or food or other liquid - roughly 0.6L as fluid component). 1-3 years: about 1.4L/day water (from fluid and food) or 1.0L/day general fluids (water, milk etc.). 4-8 years: 1.6L/day water (from fluid and food) and 1.2L/day general fluids (water, milk etc.).

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: • Sticky or dry mouth • Increased thirst • Fatigue • Dizziness

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December 2014

The benefits of

outdoor play areas Play is essential for all childrenâ&#x20AC;&#x2122;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

Swings Children 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.

Sandpits Sandpits 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.

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

Slides Slides 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.

Huge range of swing attachments

Adaptive Disab Swing Seat le

Nest Swing

Monkey Bars

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

Rock walls Rock 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.

Rings Rings give children the opportunity to co-ordinate their bodies and develop upper body strength. Images and some words courtesy of Awesome Playgrounds.

Freestanding Play Equipment

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December 2014

Happy holidays

Taking a

holiday

with your special needs child

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.

Planning

your trip

Before 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.

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.

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 Map The 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.

Happy holidays

l e v a Tr ps Ti W

hen 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. Several trips later (including overseas travel) I can report that with 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:

December 2014

Julie Jones from Have Wheelchair Will Travel www.havewheelchairwilltravel. net shares her tips on how to travel with a child with special needs.

My top tip If 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 accommodation I 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

Companion Card

Cultural – Cirque du Soleil, Australian Ballet etc.

The 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.

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

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:

Sporting events – Australian Grand Prix, NRL, Football, V8 Supercars etc. 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.

December 2014

Happy holidays

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?”, “is there a lift?” and “is there a roll-in shower?” will help ensure 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 flights When booking flights the airline will need to know the dimensions of your wheelchair (height, width and approximate weight) and they 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 equipment you need to carry on board (we carry medication which requires an esky and dry ice, and this needs airline clearance).

Preparing for airport security and travel Many 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

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 aircraft Arrive 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 seating is available with more legroom (i.e. bulk head seats). This is 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 (buy or refill a water bottle once you have cleared security on international flights) because it is quite a long wait while the whole plane loads and it can be hot as the air conditioning system isn’t fully operating until take-off.

Attractions Once 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.

Tickets Many 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.

December 2014

Preparing your wheelchair for travel A 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 insurance Even 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.

Transportation Car 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.

December 2014

Happy holidays

Family Profile 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.

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.

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. • Make sure to plan ahead with medications • Be organised with packing all the essential and snacks and toys that will help out in a tricky situation. • Take a deep breath, and try to relax … or laugh… sometimes it’s the only way! Would you do it again? Yes, yes, yes! Hard work but

priceless memories.

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December 2014

Family Profile 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 medical issues including Diabetes Insipidus (does not have the hormone which triggers the kidneys to conserve water). 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 sit on in the plane (and we always buy him his own seat). In our experience 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 accommodate this – however Virgin didn’t let us do this one time and 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.

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 take a break and eat a meal (mums – make sure you tag half way through) but it also takes away the stress of worrying about the person 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. We took a portable highchair (the ones with the blow up seat and folds down to the size of about 30cm by 30cm). It meant 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.

December 2014

Kids go

swimming

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

wim 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 Victoria for children with a range of conditions including Autism, 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.

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“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.

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December 2014

“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.’’

“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.’’

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

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

“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.

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

Special Needs and Disability Splash Shorts means everyone can enjoy the benefits of water. • • • •

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December 2014

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...

he 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 our Christmas should (and could, if we spend enough money and start a Christmas timetable in November) look like. 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 child Write 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 the ornaments and decorating the tree, Christmas baking (and the smells that go with it), buying presents, visiting Santa, Carols, friends and family popping by, the Christmas 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.

December 2014

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.

Saturday prior to Christmas and Channel 9 airs Vision Australia’s Carols 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.

Christmas comes along with all sorts of strange (albeit delicious) 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.

Ask for help

Prepare your family Everyone’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 possible Your 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.

Decorating This 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 no You 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

People 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 help you, so take advantage of having them around (or staying with you) and let them help you by looking after your children for you. Use the time to shop without children, take your children out individually on a ‘date’ that is all about them (we like a morning tea at the chocolatier, or going to the beach), go to a Christmas party, or have a night out with your husband.

Create a quiet space Make 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 iPad or a portable DVD player in there. Use it at home, to get used 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.

Gifts One 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 familiar friend inside the wrapping. My daughter LOVES squeezy yoghurt – 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.

Food Pack 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 you Amongst 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.

December 2014

Christmas gift ideas

Zooba fitball for kids

Sinchies Pops

Bobux Soft Soles

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

Use 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!

RRP $59.95 www.zooba.net.au

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

100% leather adorable prewalkers 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.

Tap Tap Games

$39.95 www.littlebigfeet.com.au

Little Treasures Soft Body Doll

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

38cm doll with a soft, cuddly body and closing eyes. She comes with an outfit and accessories.

$31.10 www.skillbuilders.com.au

$39.95 www.windmill.net.au

Bobux Step Up

Senseez Vibrating Pillow

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.

Helps soothe and calm the body through vibrations. $56.50 www.skillbuilders.com.au

$59.95 www.littlebigfeet.com.au

Proving resources and individualised programs in collaboration with parents and teachers School, home and day-care visits Therapy support

Ph 1300 132 785 www.skillbuilders.com.au

So much fun!

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

December 2014

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

Create and Carry Easel

Balance Teeter Popper Builds 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

A portable easel with whiteboard and blackboard. $42.00 www.skillbuilders.com.au

My First Lacing

Bloon Metallic Soft Ball

$16.95 www.skillbuilders.com.au

Great introduction to lacing.

Strong, 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

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

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

Established for over 30 years

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

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

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

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

December 2014

And then there were two...

Managing

siblings 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.

t 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 (TLC Psychology), to see how parents can manage this tricky balance 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.

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.

December 2014

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

e clear and concise and honest, using age appropriate B language and concepts.

•

rovide the information necessary to convey the ‘facts’ P 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.

•

hilst you want to show compassion and W understanding for everyone involved, don’t be apologetic for the sibling’s diagnosis or their needs.

•

sk your child what she thinks her sibling’s diagnosis A means and ensure that her understanding is accurate.

•

ffer ways that your child can help if she chooses to, O making it clear that it is an option.

•

rovide an opportunity for your child to meet peers P who have a sibling with the same diagnosis.

•

onvey the importance of your relationship with your C child, regardless of their sibling’s needs.

•

nsure that your child knows that there are no ‘correct’ E 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: •

Ensure that your child has an accurate understanding of their sibling’s diagnosis.

•

peak with your child about what they want their S friends to know.

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

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 often necessary to help meet all of your children's needs, as well as your own.

Dr Mickaela Schelleman (Senior Psychologist/Director, TLC Psychology) specialises in services for high developmental, behavioural, and learning needs, including children on the autism spectrum. Dr Schelleman delivers both comprehensive developmental/behavioural interventions and interventions for specific problems at home/school, and specialises in servicing rural areas throughout Australia. Interventions are available in person and via video-link/online.

December 2014

The

profile

Merz Family Our family consists of:

Our biggest challenge is:

Dad (Dennis), Mum (Shelly), Big sister (Shenae 11), Big brother (Blake 9) and our little Super Hero (Brooklyn 3)

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.

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.

Best parenting tip:

How we manage that:

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.

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.

Be POSITIVE! Keeping a positive mind helps positive things happen. 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:

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.

Our favourite place to go as a family is:

We would never manage without:

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.

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

Our favourite activity is:

Products we love:

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.

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.

December 2014

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.

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 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

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

December 2014

What’s on? Calendar December 3

International Day of People with a Disability This 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

Walk With Me Perth Perth 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

International Volunteer Day

January 1

New Years Day

Australia Day

Recognising volunteers across the globe that give their time, energy and efforts to help others. www.volunteeringaustralia.org

Santa Fun Run • Bundaberg QLD • Newcastle NSW • Sydney NSW • Canberra ACT • Perth WA

Carols by Candlelight Sidney Myer Music Bowl

25 Merry Christmas

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

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

February International CHD Awareness Month Heart Kids aims to raise awareness for all aspects of children’s heart disease. www.heartkids.org.au

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

Rare Disease Day

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

Cupid’s Undie Run This fundraiser is an annual event held by the Children’s Tumour Foundation of Australia to raise funds to find treatments for neurofibromatosis. Held on Valentines Day, this fun event will be held in Sydney, Gold Coast and Melbourne. www.cupidsundierun.com.au

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

The Variety Cycle Starting 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

Super Boss Day This 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

December 2014

Directory Aids and Equipment Abilitations Achievable Concepts Calming Kids DoAbility Kids Korthotics Medifab Milestones Therapy ProOptics Special Needs Solutions Springfree Trampoline R82

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

02 6555 9877 0490 517 960 0439 958 048 1300 122 355 02 9569 3672 1300 543 343 0434 853 245 02 8007 6041 07 5527 9794 1800 586 772 02 8213 6666

www.abilitations.com.au www.achievableconcepts.com.au www.calmingkids.com.au www.doabilitykids.com.au www.korthotics.com.au www.medifab.com.au www.milestonestherapy.com.au www.prooptics.com.au www.specialneedssolutions.com.au www.springfreetrampoline.com.au www.r82.com.au

6/2069 Moggill Road Kenmore QLD 10 Selina Place Glenwood NSW Sydney NSW

07 3378 5935 0426 972 914 0409 309 129

www.littlebigfeet.com.au www.littletoggs.com.au www.wonsie.com.au

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

1800 010 460 03 9598 8805 07 3886 3748 0424 351 545

www.bellamysorganic.com.au www.drsalt.com.au www.natureshappiness.com.au www.sinchies.com.au

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

03 6327 3910 03 9095 8060 08 8377 0399 0419 324 921

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

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

02 8521 7463 07 4046 3600 02 9211 1462

PO Box 514 Moonah TAS PO Box 6100 Hawthorn West VIC 98 Woodville Road Woodville SA Level 39, 259 George Street Sydney NSW 55 Oxlade Drive New Farm QLD PO Box 91 Glenfield NSW PO Box 20 Putney NSW

1800 141 400 1300 977 180 02 9904 8700 1800 277 328 03 6278 9985 1300 224 636 08 8347 4588 02 8259 7725 1800 272 753 02 9605 8475 02 9809 0287

www.angelmansyndrome.org www.arcinc.org.au www.agsa-geneticsupport.org.au www.kabukisyndromeassoc.com.au www.alds.org.au www.amdf.org.au www.autismawareness.com.au www.autismspectrum.org.au www.autismtas.org.au www.beyondblue.org.au www.cara.org.au www.cpaustralia.com.au www.cpl.org.au www.chargesyndrome.org.au www.cdlsaus.org

104 Yarralumla Drive Langwarrin PO Box 1083 Stafford QLD PO Box 6466 St Kilda Road Central VIC 219 Napier Street Fitzroy VIC 20 Charrington Court Baulkham Hills NSW PO Box 248 Salisbury QLD

03 9775 9962 07 3357 8277 1800 645 916 1300 658 873 1300 852 853 1300 078 108

www.criduchat.asn.au www.deafau.org.au www.deafchildrenaustralia.org.au www.downsyndrome.org.au www.epilepsyaustralia.net www.cureangelman.org.au

179 Dart Street Redland Bay QLD PO Box 717 Moonah TAS PO Box 140 Westmead NSW PO Box 173 Deakin ACT 31–33 Denison Street Newcastle West NSW 40 Finsbury Street Newmarket QLD VIC 0451 797 284 www.pws.asn.au

0412 363 856 03 6228 9099 02 9806 9960 13 11 14 02 4940 8033 07 3622 1222

www.hummingbirdseies.com www.langford.org.au www.ldc.org.au www.lifeline.org.au www.lionsclub.com.au www.mamre.org.au

Clothing and Accessories Little Big Feet Little Toggs Wonsie Bodysuits

Health and Nutrition Bellamy’s Organic Dr Salt Natures Happiness Sinchies Reusable Food Pouches

Sport and Recreation Aquatic Management Services Tasmania Awesome Playgrounds Body Cycles Coastrider

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

December 2014

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

Suite 2, 3 The Postern Castlecrag NSW PO Box 855 West Perth WA 19-21 South Steyne Manly NSW PO Box 318 Rundle Mall SA

02 9967 5884 08 9489 7790 02 8966 8500 0422 608 858

www.rarevoices.org.au

Victoria Level 4, Ross House, 247 Flinders Lane Melbourne VIC Level 11, 17 York Street Sydney NSW Australia PO Box 390 Fairfield Suite 6, Level 3, 39 East Esplanade Manly NSW 146 Burren Street Newtown NSW

03 9663 0075

www.sbfv.org.au

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

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

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

0437 178 078

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

Level 39, 259 George Street Sydney NSW

1800 771 663

www.abilityfirstaustralia.org.au

Nathan QLD Shop 2, 33 Lisson Grove Wooloowin QLD 111 Queens Parade Clifton Hill VIC PO Box 611 Riverstone NSW 20 Keane Street Currajong QLD 7/98 Barkly Street St Kilds VIC PO Box 274 Carlton South VIC 5/58 Victory Parade Toronto NSW 6 Ambleside Street West End QLD

07 3320 7500 07 3262 6009 03 9486 1918 0403 822 255 07 4759 2000 0406 602 449 1300 179 131 02 4959 8920 0481 121 844

www.aeiou.org.au www.allaboutkids.com.au www.cliftonhillphysiotherapy.com.au www.colourkids.com.au www.cootharinga.org.au www.cosmoschild.com www.everydayind.com.au www.happydots.com.au www.insynckidsot.com

2/747 Fairfield Road Yeerongpilly QLD Suite 13, Level 1, Forestway Shopping Centre Frenchs Forest NSW Level 1/490 High Street Northcote VIC 54 Consort Street Corinda QLD 603-605 Nicholson Street Carlton North VIC

1300 136 596 02 9451 5735

www.kidsmatters.com.au www.kidsot.com.au

0419 133 895 07 3379 9200 03 9387 1734

www.kidsrise.com.au www.montroseaccess.org.au www.melbourneot.com

Shop 1/26 Eva Street Coorparoo QLD 8 Steele Street South Caulfield VIC Fennell Street North Parramatta NSW Days Road Regency Park SA PO Box 118 Kenmore QLD 22 Marinna Road Elanora Heights NSW 11/116 Wellington Street Ormiston QLD Kells House, 87 Buckley Street Moonee Ponds VIC PO Box 1478 Geelong VIC 60 McCabe Street Mossman Park WA 830 Whitehorse Road Box Hill VIC Unit 1/14 Clare Mace Crescent Berkeley Vale 22 Brunker Rd Broadmeadow NSW 110 Elizabeth Street Hobart TAS

07 3324 2490 0448 316 319 02 9890 0100 08 8243 8243 07 3378 9543 02 9913 3823 07 3821 3399 03 9917 2884 0412 751 741 08 9383 5111 03 9843 3000 02 4389 1812 1300 651 704 03 6234 5717 07 3324 1114 03 8731 6555

www.movementsolutions.com.au www.nacre.com.au www.northcott.com.au www.novita.org.au www.occtherapy.com.au www.occupationaltherapy.com.au

03 5975 9197 03 6345 7333 0421 127 628 02 9519 0966 0410 788 844 03 9500 2844

www.sprouttherapyservices.com.au www.stgiles.org.au www.thetherapyplace.com.au www.therapiesforkids.com.au www.tlcpsychology.com.au www.wattletreecentre.com.au

4046 3600 1300 552 500 02 6555 9877 03 8456 6613 03 9726 8047 1300 132 785 07 5428 7126 0400 375 351 1800 333 634 0410 620 240

www.arcinc.org.au www.cleverstuff.com.au www.abilitations.com.au www.mydiffability.com.au www.senseabilities.com.au www.skillbuilders.com.au www.specialneeds4specialneeds.com.au ww.thetoybug.com.au www.windmill.net.au www.zooba.net.au

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

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

www.paediatricphysiotherapycentre.com www.paediatricworkshops.com.au www.rockybay.org.au www.scopevic.org.au www.senseability.com.au www.smalltalkspeechtherapy.com.au www.spt.com.au www.speechteach.com.au www.splashtherapy.com.au

Toys and Resources ARC Toy and Library Resource Centre Cleverstuff Life Skills 4 Kids My Diffability SenseAbilities Skill Builders Special Needs 4 Special Needs The Toy Bug Windmill Educational Toys and Equipment Zooba

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

December 2014

Top 10 tips How to make taking photos of your special needs child easier.

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.

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

Apps, Books, Blogs & websites App

National Public Toilet Map App FREE 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.net Julie Jones has a love for travel and a son with special needs. She has managed to combine the two and (with her husband and daughter, too) has had some fantastic holidays. She writes about the experience and provides lots of tips and advice.

Website

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

love

Free workshops for parents

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

who have a child in the early years before school.

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

• learn more about the services and supports available

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

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

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

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