Source Kids Spring Summer Issue 2015 by Source Kids

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Issue 1 April 2014 SPRING/SUMMER 2015

Sleep, beautiful sleep + BED REVIEW

Birthday parties for children with special needs LIFE AFTER SCHOOL NDIS - THE LATEST

FINE MOTOR PRODUCTS

RARE DISEASES Callosal Disorder & PFIC

SPRING/SUMMER 2015

Bringing fun, practical and unique products to children with special needs in Australia.

Australiaâ&#x20AC;&#x2122;s newest online disability store has just launched with a great range of products including Chewigem necklaces and bracelets, Reflo cups and EazyHold straps. The range is growing daily so make sure you subscribe to receive all the latest product releases.

www.childrensdisabilityproducts.com.au â&#x20AC;˘ info@childrensdisabilityproducts.com.au

SPRING/SUMMER 2015

CONTENTS Features 7

NDIS – your questions answered

10 Party time – birthday party feature

18 Summer maladies

Sleep, beautiful sleep feature

Breaking down the complexities of the PBS

Regulars 4

Welcome

5 Products we love

38 PFIC Yolanda’s Story

42 Touched by Olivia – playspaces for all

21 Family profile – the Sirianni family

29 Product feature – beds

44 Life after school

31 Blogs we love

46 People power wins medicinal cannabis fight

34 Special needs teacher in focus

Product feature – fine motor skills

What’s on calendar

48 Directory

50 Book review – Becoming Chief

51 Tech-man

SPRING/SUMMER 2015

Welcome The past month or so has seen some exciting advancements in the Australian disability industry with the announcements that Victoria and New South Wales will begin rolling out the NDIS from July 2016 and Queensland announced their three trial sites. Pilot schemes for the NDIS have been in place across the country and now the full roll out will start, on a region by region basis, from July next year. The NDIS will be life changing for 460,000 Australians, but also presents the question of how the rest of those people living with a disability will access services and funding. We’ll continue to follow the NDIS closely to bring you the latest updates. On the Source Kids front, I am also very happy to announce our major partnership with Flying Colours Printing, an award-winning commercial print house who has been printing Source kids since its inception. We are thrilled and very excited to have Flying Colours on board as our partner. And in more exciting news, we also welcome two new team members to Source Kids with Naomi Sirianni joining us as Advertising Sales Executive (read more about Naomi’s story on page 21) and Nardia Deverell as Business Development and Advertising Sales Executive. We are super happy to have these incredibly talented and passionate ladies on the team! Spring is well and truly in the air as the flowers bloom and the weather starts to warm. We have another great issue featuring birthday parties, all about sleep, summer related maladies, life after school and more. Keep your eyes peeled too as we’ll soon be releasing our first ever Summer and Christmas Guide. The Guide will feature a Christmas Gift Guide, Sensory Santa locations, a signing guide for the festive season and things to do over the summer holidays. Until next time,

Emma Price Publisher

Source Kids CDSA PO Box 5279, Launceston TAS 7250 Phone: 03 6327 1995 ABN: 66 434 598 812 Web: www.sourcekids.com.au

Editorial Editor: Marie-Louise Willis Writers: Rachel Williams and Marie-Louise Willis Techman: Michael Young Contributors: Emma Price, Robyn Duregger and Melissa Locke.

Send all letters and submissions to: Source Kids, PO Box 5279, Launceston TAS 7250 or email editor@sourcekids.com.au Editorial enquiries: 03 6327 1995

Advertising Advertising Sales Executive – Naomi Sirianni Business Development and Advertising Sales Executive - Nardia Deverell Graphic design Karen Anderson Publisher Emma Price

Editorial and advertising in Source Kids is based on material, written and verbal, provided by contributors and advertisers. No responsibility is taken for errors or omissions and opinions expressed do not necessarily reflect those of the publisher. All material in Source Kids is subject to copyright provisions. No part of this publication may be reproduced without written permission by the publisher. Distribution Source Kids is distributed through therapy centres, hospitals, paediatricians, special needs schools and early intervention centres. For distribution enquires, contact info@sourcekids.com.au

s t c u d o Pr

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love

EAZYHOLD CHEWIGEM This fantastic, fun and chewable range of jewellery is not only bright, fun and stylish but also super functional for children with sensory disorders or those fidgeters that need to keep their hands busy. The Chewigem range is designed for the mild to moderate chewer and is intended to sooth and comfort children through to adults with any type of additional needs. The Chewigem range has necklaces and bracelets in a range of styles and colours for children and adults as well as other chewable innovations. Chewigem products are non toxic, meeting FDA standards and are BPA, PVC, Lead, Latex and Phthalate free.

Another first in Australia, these fantastic straps attach to tools, toys, utensils, bottles and more. They allow children who have limited or no grip strength to have a more independent lifestyle. The EazyHolds are made out of soft, flexible, food grade silicone and are latex free. They are easy to clean, easy to use and easy on hands! There are a range of EazyHold straps available including infant to youth packs with a range of sizes, therapist/ teacher packs, sippy cup/bottle holder packs and a range of other straps in various sizes that suit different activities. Check out the range at childrensdisabilityproducts.com.au.

JETTPROOF

The Chewigem range is well priced, starting from $15 and is available from www.childrensdisabilityproducts.com.au.

These undergarments are made in Australia, using Calmtex, which is a high quality, light weight, breathable, moisturewicking sensory fabric with excellent stretch and recovery that keeps children cool, dry and comfortable all year round.

Great Chewigem necklaces â&#x20AC;&#x201C; enter online at www.sourcekids.com.au/competitions

The Jettproof undergarments help children regulate their body and filter sensory information, enabling them to listen, focus and learn while staying calm, and become more self-aware.

REFLO CUPS The Reflo Smart Cup is a smart alternative to sippy cups and is a great way to transition your child to drink from an open cup. The cups have an insert that controls the flow of liquid anywhere along the cupâ&#x20AC;&#x2122;s rim and at virtually any angle. The cups are BPA-free, phthalate-free and dishwasher safe, plus come in a range of great colours including red violet, blue, green and clear. Reflo Cups are available from childrensdisabilityproducts.com.au.

The range includes singlets, shirts and body suits and come in a range of great colours in sizes 2-18. Jettproof undergarments are available from www.jettproof.com.

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SPRING/SUMMER 2015

YOUR QUESTIONS

about the $22 billion scheme answered. How many people have signed up and have plans in place around Australia and how much has the trial cost to date?

that the NDIA needs to determine eligibility to access the Scheme. A checklist to determine eligibility is available via www.ndis.gov.au/ndis-access-checklist

The most recent reporting period tells us that as at June 30, 2015, 17,303 people have individualised plans in place and $952.8 million has been committed for participant support to date.

How will people transition from existing arrangements to the NDIS?

Is the roll out progressing as planned, and what are the key dates for the next stages of rollout? A spokesman for the NDIS says it is on time, on budget and participation satisfaction is very high with participants. “The Agency is committed to building an organisation capable of learning as it grows and over the past two years has reflected on feedback from participants, families, carers and providers,” the spokesman said. The full rollout of the Scheme will start progressively from July 2016, with full implementation by July 2019.

Where is the NDIS currently available? New South Wales Hunter area for people aged under 65 Years. Nepean Blue Mountains area for children and young people aged under 18. ACT Entire Territory for people aged under 65 years. Victoria Barwon area for people aged under 65 years. Tasmania Entire State for young people aged 15 to 24 years. South Australia Entire State for children aged under 14 on 1 July, 2014. Western Australia Perth Hills area for people aged under 65 years. Lower South West area of Western Australia, and Cockburn-Kwinana area, aged under 65. Northern Territory Barkly area for people aged under 65 years. Queensland Early transition sites in Townsville and Charters Towers (under 18) and Palm Island (under 65) by July 2016. Full implementation in 2019.

The transition arrangements will be different for each State and Territory and these negotiations are underway now. Details will be announced once they have been confirmed between the Commonwealth and each jurisdiction. On 16 September 2015, the bilateral agreements for the roll out of the NDIS in New South Wales and Victoria were signed by governments. It is expected that almost 245,000 Australians will ultimately be covered by the NDIS in New South Wales and Victoria. If you are currently receiving disability support, these arrangements will remain in place until your area is phased into the Scheme and your plan begins.

What exactly does the NDIS fund? The NDIS funds reasonable and necessary supports that help a participant to reach their goals, objectives and aspirations, and to undertake activities to enable the participant’s social and economic participation. In order to be considered ‘reasonable and necessary’, a support must: • a ssist the participant to pursue their goals, objectives and aspirations • be related to the participant’s disability • n ot include day-to-day living costs that are unrelated to their disability support needs • r epresent value for money (and be the most cost effective option) • be likely to be effective and beneficial to the participant • t ake into account the participant’s informal and mainstream support • n ot be something that is the responsibility of another service system The NDIS can fund reasonable and necessary supports to assist participants to live independently. This can include supports such as home modifications, skills development, or support with personal care or domestic assistance.

Am I eligible?

A participant will generally be able to access funding through the NDIS for transport assistance if they cannot use public transport without substantial difficulty due to their disability.

Determining eligibility under the NDIS legislation requires completion of an access request form, via the NDIS website. This form is specifically designed to collect all the information

The NDIS does not replace other mainstream support that is provided by the health system, such as care in hospitals or Medicare services.

SPRING/SUMMER 2015

Case study

Intensive speech therapy funded by the NDIS has transformed Reese Liston's life. The four-year-old from Barwon Heads, in Victoria, was almost speechless until she started receiving assistance for Childhood Apraxia of Speech (CAS) - a condition where the brain knows what it wants to say but is unable to communicate adequately with the facial muscles to move the mouth. Reese’s mum, Olivia, says she has been blown away by her daughter's transformation. “Occasionally she would say something like `duck' and we'd ask her to repeat it but she just wouldn't be able to and she was getting very frustrated,” Olivia recalls. “CAS is really hard to diagnose and initially we were told that the worst case scenario was, even with regular speech therapy, she might catch up to her peers by the age of eight or nine. “But luckily, she has really improved and now 60-80 per cent of her language is intelligible.” Olivia says without the NDIS, her family would have struggled to get the assistance necessary. “I went to the NDIS last June and said I wanted intense therapy - at least twice a week with a prompt-trained therapist. We managed to get a weekly appointment during the school terms which was 36 visits for the first year,” she explains. “Speech therapists are $140 an hour so we are so grateful for the NDIS because with a mortgage and three kids, we would have tried our hardest to find the money but it would have been very difficult.

“We also got some funding to see a psychologist because even though Reese is quite confident, we were worried she might take a backward step. “We were so lucky to have access to the NDIS and I really feel sorry and guilty for the other people around the country who don't have access to it yet.” Reese has funding for 14 speech pathologist visits this year - spread out into three intense blocks, before she starts kindergarten next year.

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

SPRING/SUMMER 2015

5 TOP TI PS TO PREPARE FOR THE

Think about your personal goals and aspirations. Would you like to be involved in education or employment? Do your goals include more social interaction through sports, arts or community groups?

Think about what supports you need to achieve your goals and where the supports will come from? Think about what you will do, what your friends and family can do to help you, what supports are in the community that you can access and what do you need from the NDIS? How could the NDIS help you achieve these goals?

NDIS

Keep in mind that everyone is different. Your plan is about you, your goals and your circumstances. Everybody has different goals and aspirations, and different circumstances, so even if two people

have similar disabilities, they might have very different plans reflecting their own needs, goals and existing supports. And it is important to remember that if your circumstances change, you can come back and change your plan to better suit your needs.

Don’t just think about traditional disability services and supports. Now is your chance to be creative and take some time to think about what will work best for you, with other supports and services you may

not have tried before. You can ask NDIA to include supports for this in your plan. It helps to write this down and bring it to the

Consider the formal and informal supports you already have in place. Informal supports refer to family, friends and community relationships — how can these supports be strengthened? Would it help if you were

linked to other groups and programs out in the community? Formal supports refer to paid carers, services, therapy, assistive technology and equipment. What can the NDIA do to help you maintain and strengthen all of your supports so you can achieve your goals?

meeting with your planner. Pre-planning workshops are also available.

You can also invite trusted family, friends, carers or an advocate to attend your planning meeting to help you develop your plan. Once your plan is in place, you can decide to manage all or a part of your plan, or ask the Agency to manage it for you.

Where therapy is not hard work – it’s fun! Therapies for Kids are specialists in providing ‘tailor-made’ programmes that are appropriate for each child’s individual needs and which help to improve their fun and function in everyday life. We have a holistic and transdisciplinary approach to treatment, which is delivered in our all-abilities gym, resulting in increased community participation.

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

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

SPRING/SUMMER 2015

Party time

HOSTING A PARTY FOR YOUR SPECIAL NEEDS CHILD

“It’s my party and I’ll cry if I want to” – and that’s just the parents. Let’s face it, birthday parties should come with a warning label. So, on a day when even the most well-adjusted, neurotypical little darling is likely to have a mini-crisis, how is it even possible to expect that your special needs child is going to manage without a meltdown? As a parent, it’s easy to get caught up in the birthday party whirlwind, Pinterest has a lot to answer for. A lot of the things we expect from a birthday party, the social norms we conform to, are just not understood or appreciated by our special needs kids. But do you know what? A party doesn’t have to have a Frozen theme with a massive cake and twenty friends singing ‘happy birthday’ to be a good celebration. Do what you can to make your child happy on their special day. Adapt to their needs. And hopefully you’ll manage to make it through without resorting to raiding the liquor cabinet.

WHO TO INVITE? This is not the time to surround yourself with a cast of thousands, or repay other social obligations, or catch up with your friends from mother’s group. The smaller the better – with familiar special people - will make it a much easier party to manage. You don’t have to invite the whole class, or everyone else who has invited your child to their party, or your entire family. The maxim is generally one friend per year of age but don’t feel like this is a hard and fast rule you have to stick to either. The entire purpose of your child’s birthday party is for them to feel special and have a wonderful time – so if they are overwhelmed by crowds of people, then minimising the guest list, makes sense. If you only invite a few children, it will be easy to chat to their parents to see what you can do to make sure the party works for them too.

THEME Lots of children have favourite hobbies or interests – and following that as a theme for their party can be fun and validate their current obsession. Bugs, dinosaurs, space, rocks all have great party possibilities and there are lots of sciencey-type party entertainers available.

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LOCATION Choose somewhere familiar to your child. Your house, or somewhere they are used to and love to go to. This is not the time to try out the new play centre. If you are having the event at a play centre, have a frank discussion with the establishment beforehand. They may have options such as a quiet room for kids who need a break or ideas on how to make the party easier and more fun for you. They will have done it before! You could also think about going to a sensory movie event.

TIME Short is so very sweet. Make sure your invitations have a start and an end time, so people know when to leave. Usually the cutting of the cake signals the beginning of the end of the festivities, but if you are leaving that out then handing out the party bags is a fairly clear indicator that the party is finished. Parties that run between meals (over morning or afternoon tea time) are usually shorter and easier to manage.

HELP You need troops. You are going to need to have your hands free to run the party, greet guests, organise food and the hundred other jobs that will keep you buzzing on the day. Consider organising the following:

Birthday kid companion If your child needs one-on-one care, make sure you have a trusted friend or family member to be on hand to cater for them entirely, to make sure their needs are met throughout the party.

Ask parents to stay If each child has a parent to supervise them, the whole event will be so much easier to manage. Hire some teens to help manage the children and lead the games/action.

WHAT TO DO FOR ENTERTAINMENT Games This is when those teens will really come in handy! Consider having a quiet activity (bubbles/face painting) for children who don’t like or can’t participate in the games.

Quiet Play Consider having an area or room set up with Lego, bubbles, drawing/colouring station for children who need some space or quiet.

Entertainment There are plenty of entertainers experienced with children with special needs you can hire to come to your child’s party. Face painters, magicians, mad scientists, balloon tricksters… and they can fit in with your theme, too.

HAVE A PLAN Have a plan and party schedule organised before the party. You can include this in your invitation so that your guests will know what to expect. If you have a child who would not enjoy presents or birthday cakes or happy birthday songs, this is a great place to alert the guests too.

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You can also have a visual board with the schedule printed on it for children to follow a plan so there are no surprises for those who don’t like them. They can tick off the activities as they are completed. Going through the schedule with your child prior to the party can help prepare them so they don’t feel overwhelmed on the day. You can also practise the rituals of the birthday party before the event, so your child knows and understands what might happen when the cake comes out or what to do when people arrive with gifts. If these prove too overwhelming for your child, you can plan to leave them out of the party altogether.

FOOD

on the invitation (that might help to prompt them to rsvp too). What if your child has lots of food restrictions or is overwhelmed by lots of choice? Don’t feel the need to provide everyone else’s favourites. Choose the food your child loves. If your child doesn’t love food, or there are too many conflicting allergies, you could pack food into named party bags or boxes and hand them to each child, doing away with the party food table altogether.

GIFTS If your child finds new things overwhelming, don’t feel pressure to open gifts until after the party.

Keep in mind that sugar, colours and preservatives send everyone nuts. There is no reason why you can’t just keep to fruit and cake at the party and put lollies in the lolly bag for parents to manage.

Having a birthday celebration is a wonderful opportunity to

So many people have different dietary requirements, so remember to ask people to let you know when they rsvp

day to your special child and it could possibly end up being a lot

celebrate your child and the amazing things they (and you) have accomplished over the past year. Don’t let preconceived ideas or the fear that things might not be perfect put you off – adapt the more enjoyable that you could ever have imagined!

SPRING/SUMMER 2015

Party Invitation Tip for when inviting a special needs child to your child’s party So, your child has a classmate with special needs whom he would like to invite to his birthday party, but you don’t want to tread on any toes or say/do the wrong thing. First of all, on behalf of all special needs parents everywhere, thank you! Unfortunately, due to all sorts of reasons, our children are often left out of birthday parties and playdates, so thank you. They need this. We need this. Secondly, rest assured, we are not going to be insulted or offended. Once we’ve got past the eternal gratitude part, we’re probably going to want to work with you to make sure that the party will be great for everyone involved. Indicating that you are aware that our child potentially has some limitations that might need to be accounted for is not going to offend us. We know this already. We are more likely to be really touched that you care and want to include our child in spite of their differences. So, some things to consider:

Invite the parent to stay They know their child better than anyone else and it will be much easier having them there to care for their child. Plus – you could make a great new friend.

Party access Does your house have steps or a tricky entryway? Let the parent know. If their child is in a wheelchair, they may have a ramp they can bring along. Consider width of the chair and whether you’ll need to do some furniture moving before the guests arrive.

Food Discuss what food you were planning on serving and the parent can then decide whether they need to supplement with food their child can/will eat.

Location If you are having the party out of home, discuss the location with the parent. If it’s at a park with a pond for example. If you are having the party at a play centre, you could discuss the additional needs with the management when booking the party – they may have a chill out room you can use if the main area becomes too noisy or provides too much of a sensory overload. They also may have special equipment for children with physical disabilities. If you are having an activity like a surfing lesson or horse-riding remember that plenty of centres can offer both activities for people with disabilities too, with some notice.

Schedule Discuss what you were planning to happen at the party and the parent can decide whether to attend the entire event or remove their child for a portion they may struggle with. If it’s a swimming party, for example, the parent can then decide whether they will be willing to get in the water with their child or just get there for the afternoon tea and cake. It will also give the parent the opportunity to prepare their child for what is going to happen.

Don’t be offended And lastly, please please please, from the bottom of my heart, do not be offended if the special needs child you have invited does not end up attending your child’s party. Our lives are crammed full in a way that I think it is difficult for other families to fully understand and sometimes things fall through the cracks or just end up in the ‘too hard’ pile. I am writing this paragraph with such passion as I have been a terrible ‘birthday party mum’ this year: so much so that my daughter’s BFF’s mum took a photo of her invitation and texted it to me as she thought I may not have picked up the post from my daughter’s post pocket at school. Which I hadn’t. I have form. The thing is, I am always so touched and pleased that she has been invited, but in our crazy whirlwind of meds and doctors and hospitals and seizures and PEG feeds and therapy and very little sleep, often it is our social life that suffers. It’s really the only parameter that has some leeway. So please don’t be insulted and please know that even if we didn’t make it, being invited really did touch our hearts.

SPRING/SUMMER 2015

PARTY TIPS FROM THE PROFESSIONALS

Preparation, preparation & preparation!

We know that new and unpredictable environments are difficult for the vast majority of us, and are likely to cause anxiety for a child with heightened sensory sensitivities. So preparation is the key. Consider visiting the location of the party with your child, prior to party day. That may be the friend’s home, local playground, or a noisy indoor play centre. What are the triggers likely to be in that environment, for your child? Is it the noise, space, ‘party food’? A visit early on may help you think through potential triggers, and consider potential solutions. This could be as simple as requesting a particular table in the party room of an indoor play centre, or finding an appropriate quiet area in the playground. What are your child’s centering/calming tools, and which of those are appropriate to take? Armed with information from the host, you may find it’s quite okay to take your child’s pop-up hideout tent and headphones, or set up a drawing area away from the crowd, or to pop some trains in your bag and know where the sand pit is. Is a social story appropriate for your child? This might include expected behaviours, a sequence of events, who will be there. Of course this requires some information from the party host – if there’s going to be a clown at the party or a reptile man passing around snakes – you need to know! Some children would benefit from a visual schedule and without turning into a control freak and taking over the party, you may be able to discuss the timing of some structured and unstructured games with the host. Is your child able to tell you when they need a break? It’s okay to do so, and it’s also okay to leave early when you can see your child has had enough. The singing of the ‘happy birthday’ song is sometimes a distressing time for children with sensory sensitivities. It may be the excitement (cake’s next!), the fact that everyone tends to gather

The invitation arrives to attend a birthday party! As a parent of a child with special needs this is a bittersweet experience. You are so happy that a kinder or school family have embraced inclusion but at the same time you know that the afternoon could be a smashing success or result in a melt down and tears (yours or your child’s!). If your child is under seven then it’s normally okay for you to attend, but as they get older you are expected to drop off and things might go pear shaped if you haven’t prepared! Here are some great tips from Occupational Therapist Robyn Duregger and Physiotherapist Melissa Locke.

around ‘nice and close’, or the singing itself. If you know this is likely to be a trigger, think about your positioning – stand at the back, pop on those headphones (if your child has and loves them), or provide a sensory tool (a great time for chew toys). I’m confident you’ll find the majority of party host mums and dads will go out of their way to include your child, and will be happy to make some minor adjustments to help the day go smoothly for ALL the children. All you need to do is ask. Written by Robyn Duregger - Paediatric Occupational Therapist at North Coast Therapy on the Sunshine Coast in Queensland. www.nctherapy.com.au • www.facebook.com/nctherapy

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Key points Physio to remember • Accept the invitation (if your child wants to go!) • R ing the parent and do some gentle investigating. How many children are attending? What activities are happening? Is the park, hall or home accessible for your child’s needs? What toilet facilities are there, if required? Indoor rock climbing parties for example, are not fun if you can’t participate. Facilities may have modified harnesses and specialised instructors. A conversation with the host asking about this is best done a week before the event, not as you arrive at the venue! Let the host know if your child is super sensitive to noises, allergic to latex or certain foods. • A nticipate that your child might not need to stay the whole time. Many a party for anyone is made memorable by leaving before things turn ugly! Consider sleep times for your child or how much stimulation or party food they can cope with. This is true for all of us!!! • M ake sure that you can stay for the main event – cake cutting, puppet show, face painting! Explain to the host beforehand that you may not stay for the whole event. • D on’t be a helicopter parent! Let events unfold and watch from afar. Often another parent or child will step in to make suggestions about how games or activities might work better for your child. • Most of all – celebrate the event! As a parent of a child with special needs, you can be a great educator of other parents on how to make a party inclusive. • P in the tail on the donkey/ rabbit might be done sitting down or on a board that can be placed at different heights or on a wheelchair tray.

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

• D onut eating competitions will have different length strings from the clothes line and everyone can lie down, sit or kneel to play the game. • S tatues games might be more about what great shape or posture you can make – rather than being still. • P ass the parcel – can be wrapped in scarves which are easy to unwrap. • J umping castles work well as do dress up parties and face painting. • Dancing is always fun. As high school comes along birthdays are more likely to be movie nights or out to the local pizza restaurant. Accessibility and food tolerances as well as numbers attending are the major hurdles, but by that time, friendships are often cemented and your child’s friends anticipate their needs, whilst your child is confident to explain what works well! Written by Melissa Locke FACP, APAM – Specialist Paediatric Physiotherapist at Movement Solutions in Queensland. www.movementsolutions.com.au

So much fun!

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

SPRING/SUMMER 2015

Cool party food ideas We couldn’t possibly write a birthday party feature and not spend a teeny amount of time on Pinterest. We’ve found some cool, party food ideas – all made from fruit. Perfect to fit onto the coolest party table, with minimal allergy risk and no sugar rush!

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SUMMER MALADIES Sunburn A little bit of sunshine is great for us, but too much exposure to UV rays can cause sunburn and skin cancer. In Australia it can take as little as 15 minutes outside to start to burn, so it’s important to be sun safe – especially in summer.

PREVENTION Use sunscreen with an SPF of 30 and remember to apply it 30 minutes before you go outside and to reapply every two hours. There are lots of sensitive and natural sunscreens on the market if you want to avoid the chemical nasties or your child has sensitive skin. Wear protective clothing and a rashie when swimming or playing in the water. Wear a broad-rimmed hat. Wear wrap-around UV blocking sunglasses. Use a zinc-based lip balm. It is advised that babies under six months do not use sunscreen, so make extra sure that they are covered and protected from the sun with sunshields and covers. Sit in the shade between 10am and 4pm and try to avoid being out in the sun in the middle of the day.

CURE Wear cool, loose clothing. Take cool showers or baths. Drink plenty of water; if you are sunburnt you will also probably be dehydrated. Apply moisturiser – this won’t stop the peeling but will help to moisturise the new skin underneath. Moisturisers containing aloe can be particularly soothing. Some after-sun treatments come in sprays, which can be easier to tolerate. Don’t peel off peeling skin. Stay out of the sun until the sunburn has healed. Seek medical treatment if the sunburn is extreme, with blisters, headache, unwellness and/or difficulty urinating.

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Mosquitoes, midges and other annoying bugs The Dalai Lama is famously quoted as saying: “If you think you are too small to make a difference, try sleeping with a mosquito” – which, of course, has nothing to do with insects and everything to do with the power of the individual but also highlights just how irritating summer nights can be when being terrorised by these flighty bug(ger)s. And if a sleepless night or slap-filled barbeque isn’t enough, they can also gift us all sorts of fun little illnesses like Ross River Virus, Barmah Forest Virus and Dengue Fever.

PREVENTION Keep them out Install insect screens on the doors and windows of your home or you could go all ‘Out of Africa’ and hang vast swaths of romantic tulle over your bed to keep them away while you sleep.

Spray them off Use commercial insect repellent or if you would prefer not to use DEET on your or your child’s skin, try a natural insect repellent. Citronella oil, coconut oil and lemon eucalyptus are also effective and can be applied with carrier oils or in ready prepared formulations.

Plant it up Some of our favourite kitchen garden essentials also, handily, keep the bugs away. Plant pots or beds of lavender, basil, garlic (contrary to popular belief studies have shown that eating the pungent bulb will not keep the bugs away – only your friends, but the plants can act as a repellent), rosemary, peppermint, marigold, citronella (yes – it’s a plant!), catnip (your cats – and those belonging to all the neighbours too - will love you) and geraniums.

Blow them away Mosquitoes find it very difficult to fly in any sort of breeze, so choose a windy spot for your picnic, plug in a fan in your outdoor area or use a personal fan. Point the fan towards your legs as the mozzies tend to fly closer to the ground to avoid natural air currents.

Mop it up Any stagnant pools of water attract our flying friends. Clear up gutters, empty unused plant pots, children’s paddle pools and birdbaths too.

Dress to (un)impress Mosquitoes fly low to the ground, looking for shapes that stand out against the horizon. Dark clothing obviously makes humans stand out more clearly than light clothing.

Decline their invitation It’s party time in mozzie-land at dawn and dusk. Stay inside or ensure you’re adequately protected if you dare to risk it.

CURE All bite marks are allergic reactions and so the size and discomfort depends on the amount of allergy you have. Small children tend to react more and their reaction gets less as they get older. Occasionally, people can have a severe reaction called anaphylaxis. Symptoms include hives, difficulty breathing, difficulty swallowing and swelling of the tongue. If this is the case, seek medical attention immediately. Generally, though, the biggest medical risk is infection. Try to prevent scratching the bite as if the wound is opened, it can become infected. Cut nails. Put covers (such as gloves) on hands and/or cover the bite. Apply ice to the welt to bring down the inflammation. Apply aloe, tee tree oil or apple cider vinegar to the welt to stop the itch. See your doctor if there is pain or discomfort in any other area such as: Hives or difficulty breathing. The swelling or itching gets worse after 24 hours. The site appears to be infected.

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rovide light and water filled foods like watermelon, yoghurts and P salads for snacks and meals and avoid sugar as much as possible. Consider adding coconut water or electrolytes if the day is particularly warm, your child is being active or they have had diarrhoea. If you know you have a big outdoorsy day ahead of you, plan to drink plenty in the days leading up to it. Remember that playing IN the water is not the same as DRINKING water – and schedule drink breaks.

CURE If you see signs of heat stress in your child take them indoors into air-conditioning or into the shade and cool them down. Offer them drinks with electrolytes. Use a shower, hose or cool compresses to cool their skin. Don’t use ice packs without a cover to protect their skin. Don’t use adult rehydration or sports drinks that could dehydrate them further.

Dehydration Our outdoor lifestyles, the heat and humidity in Australia, coupled with the fact that we may be busier and more distracted when out and about, especially over the holidays and festive season, means that we need to be conscious of how to prevent dehydration. Children who are non-verbal or unable to communicate that they are thirsty are at particular risk. A child’s body is made up of about 75% water, and adults 5565%, and this is lost in our day to day lives, through the bodily processes of breathing, sweating, urinating and defecating. Burns and Diarrhoea pose an extra threat. Dehydration occurs when the water and essential minerals and salts are lost. Heat cramps, heat exhaustion and heat stroke can occur. Symptoms of dehydration include: thirst, not making tears, decreased urine output, decreased sweating, lethargy, muscle cramping, heart palpitations, nausea and vomiting. Children with special needs are often at higher risk because of their diagnosis, their medications or simply because they may be less able to read their body’s own signals. It is imperative that parents/carers are aware of how much fluid their child requires and whether their diagnosis means they are at high risk.

PREVENTION Provide plenty of water to drink and check with your doctor to see how much extra water you should be putting down your child’s gastronomy tube if they have one. Keep indoors in the heat of the day or stay in the shade. Prevent sunburn. Wear a hat and light clothing.

See your doctor if symptoms don’t improve, or they worsen. Call 000 if your child has two or more of the following symptoms as they may have heatstroke: • Not sweating (at all) • A n extremely high body temperature • A very fast and strong pulse • Throbbing headache • Dizziness and confusion • Shallow, noisy breathing • Loss of consciousness

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Source Kids family profile Archie has many presenting issues that come from the

Our family consists of: Daniel (Papa) Naomi (Mum) Luca (4 years) Archer (3 years) We live: Bentleigh, Melbourne Victoria

disorder such as Hypotonia (low muscle tone), Nystagmus (involuntary eye movement), hearing problems and Global Development Delay. He is currently non-verbal but very active physically. He attends an Early Education program twice a week at Bayside Special Development School in Moorabbin and is thriving in this environment.

Our child is dealing with the following disability: Archer has a rare congenital disorder – Partial Agenesis of the Corpus Callosum. Corpus Callosum is the major nerve connecting the right and left hemispheres of the brain. This callosal disorder falls under an umbrella of corpus callosum disorders such as ‘agenesis’, a complete absence or ‘dysgenesis’, a malformation, for example. We don’t know the cause. Each case is different, every single one! Some go through life not knowing they are missing part of their brain.

How we manage that: We do what we need to do! Whether this is via early intervention therapies, endless appointments with experts, furthering our knowledge and looking into alternative therapy, by far the biggest management skill is patience. Archer will prosper with our guidance and love. Milestones mean squat, they are irrelevant when dealing with a special needs child. I was so hung up on indicators with my first son. Archie’s path has thankfully shown me otherwise!

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Our favourite place to go as a family is: The outdoors! Boys will be boys and sunshine is so good for the soul. We enjoy parks, the zoo, playing with our friends and museums. Anywhere that can be physically challenging for Archie is also a bonus.

Our favourite activity is: Using our imagination; reading books; practising our fine motor skills; eating (Archer loves to eat!); and physical activities.

Our biggest challenge is: Archie’s frustration! Although he is gradually communicating via PECS (pictures), it is a very tedious and challenging time for us all. He has so much to say and is unable to say it. The more we learn how to communicate with him, the easier it will be to decipher his needs and wants.

be open and listen to your child. Not necessarily via sound, it could be a gesture or movement or their eye contact. So many clues are given to suggest their desires; it is our job to solve the mystery. To be very cautious when self-diagnosing via the internet and always trust in the expertise of the health practitioner/s that best suits your child and their specific needs.

The most useful advice we’ve been given: Let Archer be a child, everything will come, all in his own time.

Most annoying unhelpful advice: Being told, ‘Don’t worry he’ll be fine’. Words such as these are easy when visiting or playing but there is no escaping the worry we have as parents or the condition that he holds… forever.

This journey has taught us: Best parenting tip: Take every opportunity to look after the entire family – each sibling and each relationship; including your own. Actively

So very MUCH! To be more considerate, to be more open, accepting of others and their predicaments whatever they might be. As for our predicament, we must cherish life, each other and

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never ever lose hope. Archie will do what Archie will do all in his own time. We are blessed for he has taught us so much about life in general. Expect the unexpected…. Always!

What we would never manage without: Currently Archer’s school, Bayside SDS in Moorabbin, our community, the funding our government allow us, other special needs families, our very own support network group for Archie’s disorder called AusDoCC and of course our extended family and friends.

searched every brand of kid’s shoes imaginable, opting against the very expensive specialised brands; I found Skechers had a fantastic range of ‘high top’ shoes which gave the same support as any other, winning! Bubbles – inexpensive but gives so much joy and can also help with pointing whilst popping.

People we love: OT – OT Kids in Highett, Melbourne Physio – Physio For Kids in McKinnon, Melbourne

Products we love: Chewlery – there many different types of sensory processing oral motor accessories on the market, Archie having access to such products has helped his awareness, security and motor planning. Parachute – Kmart have a parachute on the market. He adores this large piece of coloured material, whether he is wrapping himself up in it or enjoying the freedom he feels whilst under its flow, this is great for sensory processing. Books – the best advice I ever got whilst at a communication course was to choose books relevant to the child’s current needs. Archer is not interested in being read a novel, he may never be. He wants to look, touch, feel and….learn. Big hard books with bold colours and very simple wording are the key at our early stage. Also, at every opportunity we try to read TO him, in front of him, thus engaging and interacting. Sleeping bags – we still use sleeping bags on Archie for bed. He moves continuously and I’m so thankful sleeping bags are available. We use the Ergo pouch bags and they currently go up to six years of age. Pram – We have the Special Tomato EiO Push Chair for Archer. This will take him all the way to 55-60kg. As he gets bigger and stronger the mainstream prams and strollers on the market just wouldn’t cut it, we needed to invest in a larger one. We are very happy with our choice. IPad – as most would agree, brilliant for fine motor work, attention and learning. Communication devices – we currently use PECS (Picture Exchange Communication Service) and have found it to be so liberating. Archer can tell us and also request what he needs and wants. Outdoor equipment – a trampoline and playhouse, anything relating to movement is beneficial to brain activity. Chair – we have the DES Kelly Chair, we found Archie needed a little more support than a typical kinder/ children’s chair. Adjustable legs, armrests, back rest and depth. What more could you ask for?! Kinetic sand and playdoh – fine motor skills, fun, imaginative and sensory processing, it’s a real winner in our household! Shoes – Archer was delayed in walking and needed added support to his ankles when he did begin. We

Speech – Noah’s Ark Early Intervention services Chiro – Inspired Health Chiropractic in Ormond, Melbourne Playgroup – Malvern Special needs Playgroup in Malvern, Melbourne Support – AusDoCC, the Australian association of Disorders of the Corpus Callosum

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SLEEP

beautiful sleep

When we were little we fought it, as teenagers we gorged on it and we (mis)spent our uni-years dancing (or cramming) all night and recovered by sleeping all day. And then just as a slightly more balanced and healthful eight-hour routine had been established, the idea of a baby began to take shape. I once overheard a very pregnant woman complaining about how uncomfortable she was and that she couldn’t wait for her baby to be born so she could finally get some sleep. Oh the blissful ignorance of pre-child life. And it’s too late to turn back once the reality begins to dawn that the fairy tale ideal of a baby sleeping peacefully in your arms while your husband looks on proudly, exists only in Practical Parenting photoshoots and that even a ‘good’ sleeper needs feeding through the night and thinks that morning starts at 5am. Every. Day. Of. The. Week. Every person who has had a child knows what sleep deprivation feels like. Even the dads who ‘don’t hear’ the baby cry during the night could probably benefit from a less broken eight hours. But here’s the thing – most children begin to sleep fairly regularly and for fairly decent stretches after a time. It is in their evolutionary best interests to do so. Of course, lots of families choose to have more than one child, so there are a few years of accumulated lack-of-sleep experienced, which makes it ghastly and even dangerous. There are countless articles written by people a lot more qualified than me informing us of all the potential harm; from obesity to every kind of horrible disease caused by lack of sleep. But, in spite of that, if your child had colic or reflux or just liked a regular milk top-up and cuddle through the night, then this article isn’t for you. If little Johnny ‘grew out’ of his sleep issues, or a Tresillian sleep nurse sorted

Milly’s out: if you found a warm bath and massage before bed or lavender oil on the pillow actually worked then please stop reading now. Because here’s the thing: there is an entire underworld of families who don’t sleep through the night. Ever. Whose children haven’t ‘grown out’ of their sleep issues or have sleep disorders as part of their diagnoses that make it unlikely that they ever will. There are parents who take it in turns for years (forever?) to calm and entertain their special child through the night. Parents who haven’t slept in their own bed for years because it is just easier to sleep in the single in their child’s room so that the whole house isn’t disturbed. There are children who are playing at two, three, four am. Every night. We say it isn’t a competition, but, actually, it may be. When you haven’t slept properly for six years straight you have to feel you’re winning at something. Now before all of you oh-sleep-deprived ones get excited: a disclaimer. I have not cracked the sleep code. In spite of digging around the Internet, putting all my investigative tools to work and using my little sleep-a-phoebes as test dummies, I have still had two children both refusing to go to sleep and then doing the 2am wake ups for most of last week (what is happening at 2am in my house?). I hope that some of these may at least be something to try. Sometimes just the hope of something new makes it feel like we’re being proactive about the situation. However, I am fairly certain that the only absolute way to ensure a solid night’s sleep is to hire a night nanny. But that might just be because I’m sleep deprived.

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Creating the right sleep environment

• Dim lights in the house 30 minutes before bedtime.

Creating a peaceful and dreamlike space and bedtime routine is an imperative step to ensure a healthy sleep pattern – for everyone in the family. Often children with special needs do have sleep disorders and disturbances, but sometimes these can be lessened or eradicated completely by implementing a few easy steps and ideas.

• E njoy a calming bath. Crazy causes cortisol to be released, which makes it difficult to go to sleep. • C heck that PJs don’t create any sensory difficulties: remove any labels, check seams and choose a larger size for those who don’t like anything tight or a tight suit for those who need the pressure and are irritated by flapping fabric.

A peaceful bedroom

• R ead a story, put on some calming music, sing a lullaby; it doesn’t really matter what you do as long as it is consistent and calm. Your child will become to understand (ideally) what is expected of them by where you are in a regular routine.

Not all children are lucky enough to have their own bedroom but creating a peaceful sleep environment is important for everyone. You can create a child’s special sleep zone within a shared bedroom with specially designed beds, room dividers, or screens.

• W rap, tuck or secure in bed, making sure the room isn’t too warm. An ambient temperature of 18-20 degrees (thermally neutral – as in your body doesn’t need to shiver to keep you warm or sweat to cool you down) is ideal for sleep.

When decorating a bedroom, spare a thought for its main requirement – sleep. Try to keep the space calm and peaceful by removing clutter and electronic devices.

The perfect bedding for your child

Decorate with calming colours. Recent studies have shown blue to be the most sleep inducing colour, with yellows and greens following closely behind. Purple is invigorating and makes you want to be creative – not great at bedtime. Block out curtains are essential.

A consistent routine It’s really important to have a consistent bedtime routine; go to bed and wake up time; and sleeping space. Work out how much sleep your child needs for their age and then work out the times that work out best for your household and child. Some children need an early bedtime and will just be overtired and more difficult to settle at a later time – and will probably still wake up ridiculously early anyway. • M ake sure there is no caffeine in your child’s diet and check the sugar content of dinner and pre-bedtime snacks. • Make sure TVs and screens are off an hour before bedtime.

Many families swear by weighted blankets. Use Queen-sized quilts on single beds so you can tuck the sides in really tightly for extra firmness – and less escaping potential. A light sheet can be held down with bean bags so it doesn’t slide around. Wrapping isn’t just for small babies – the same sense of security they enjoy for being tightly wrapped often helps our special needs kids to sleep well too. Sleeping bags can keep busy bodies warm all night, without needing to keep doonas in place. Sleep supports: there are a number of special needs supports on the market but you could just try things like a cushion between the legs for a side sleeper or a rolled up towel under legs that have tight hamstrings and have difficulty straightening completely. Beds: Not all beds are created equal. If you have a child who has sleeping difficulties, specialist care needs or who likes to escape during the night, it might be worth having a look at a special needs bed or mattress. See our bed feature for some great options.

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WHEN YOU’VE TRIED EVERYTHING ELSE …TIPS FOR THE DESPERATE.

THE

MELATONIN STORY

There was very little disruption to this system, bar the glow

Until fairly recently (in evolutionary terms, anyway) mankind rose with the sun, the bright light told our brains we had better be alert to keep out of the way of hungry tigers, we went about our hunting and gathering and then, once it the sun set again, the darkness told our brains to release melatonin to make us go to sleep.

from a camp fire to keep predators away, or the flicker from a candle, for thousands of years and it all worked very well until Thomas Edison invented the electric lightbulb about 100 years ago and an approximation of the sun could be accessed 24 hours a day. Oh the joy! Oh the bliss! Grocery shopping at 10pm, dancing till dawn, no stubbing of toes in the dark on the way to bed. And then, to make a good thing even better, screens entered our lives. The possibilities seemed endless. Minecraft to wind down, movies to put the kids to sleep, lullabies on the iPad. The only problem is – it’s not working. The light, whether from the sun or from an artificially produced white or blue glow from screens, televisions and lightbulbs all tell our brains not to produce melatonin, the sleep inducing hormone that helps take us from wide-awake to fast asleep. And it doesn’t matter if the room is dark and there is only a glow – that melatonin is tricky stuff. So, what do you do if you want to use a screen, not stub a toe in the dark, enjoy the benefits of living in the 21st century and still get your children to sleep?

Melatonin tablets Prescribed by a GP in Australia, melatonin most commonly comes in 2mg tablet form and can be useful if given about 30-60 minutes before bedtime. There seem to be few reported negative side effects from using the supplement if your child has a sleep disorder and some research has been done noting the benefits in helping children with Autism and other developmental delays to have improved sleep. Don’t attempt to self-dispense as there have been some recent studies showing potential harm in using Melatonin in neurotypical children.

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Red light bulbs:

Ways to achieve this:

Standard energy efficient light bulbs emit a blue light and

Remove any electrical appliances from the bedroom. Switch off

therefore halt the production of melatonin. Replace light bulbs

WiFi, cordless phones, and all other electrical appliances in the

in the bedroom (and certainly the bulbs of any night lights and

house at night.

lamps) with red bulbs. The red glow has little to no effect on

Sleep on a metal free bed (a latex mattress rather than an inner

melatonin production.

sprung one for example) so any radiation cannot be conducted

Red back light app:

through the body.

Yes. There really is an app for everything.

It can all sound a bit alarmist – surely the technology, such as Wi-

The Twilight (Android) or F.lux (Apple) apps both work with your local sunset and sunrise times to adapt the light your screen emits. Once the sun has set it changes the backlight to an ambient red/orange, which is much more restful for your eyes and won’t disturb your melatonin production.

Get outside: Making sure you get enough sunlight during the day means your body finds it easier to regulate its Circadian rhythm, stay awake during the day and then produce melatonin as the sun sets.

Electromagnetic radiation (EMR) A lot of people a lot less crazy than me have been talking about this lately. There really doesn’t seem to be any definitive study that has found a safe level to be exposed to but certainly we do know that, once again, EMR can affect that Pineal gland and lower our melatonin production and therefore disturb our sleep. It is impossible to avoid EMR but there are ways to reduce our exposure to it during the night, helping us to have a more restful and restorative night’s sleep. It has been argued that it is even more essential for children, who are even more sensitive to the effects, to sleep in a room that is as free from EMR as possible.

Fi, wouldn’t be so widely available if it wasn’t safe? The problem is that governments are working on the assumption that it is safe until proven otherwise – and the studies and anecdotal evidence rolling in is starting to prove otherwise. Schools in France, who had rolled out the use of Wi-Fi, have removed the technology in favour of Ethernet connections and other European countries are looking to follow suit. It just makes sense to protect the brains of our most vulnerable, especially while they are asleep.

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The Rabbit who wants to fall asleep – a new way of getting children to sleep Okay – I am a bit sceptical about this one but apparently this book by Swedish child psychologist Carl-Johan Forssen Ehrlin has stormed to the top of the bestseller charts since it was released in April. Proof that it works, or proof of the desperation of sleep-deprived parents, I’m not sure. Mr Ehrlin says that in a bid to help children relax and drift off to sleep, he uses psychological and positive reinforcement techniques. He said: “This is an innovative and ground-breaking type of bedtime story that uses sophisticated psychological techniques.

Herbal Remedies There are a bunch of herbal or natural remedies that are believed to help with sleep. For those wanting to try a natural approach first remedies such as chamomile, hops, passion flower, valerian and St John’s wort are believed to improve sleep. However, keep in mind that these remedies do not go through the same testing as prescribed medications from your doctor or paediatrician.

And for the really desperate…medication There are a swag of medications parents and professionals have tried to break the sleep cycle and to try and let everyone have some sleep. Some that spring to mind include Phenergan, Vallergan, Clonidine, and other sleeping tablets such as

“These are formed in a way to help the child relax, fall asleep

benzodiazepines prescribed for sleep. These should not be given

faster and sleep calmer every night. The tale gives suggestions

without a prescription by your GP or Paediatrician and should

to the child’s unconscious mind to sleep.”

only be given under close medical supervision.

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Bed Review

The Safety Sleeper The Safety Sleeper is a bit different from the other beds we

to fall asleep. The tent-like system creates a safe space for

are featuring in that instead of being an actual bed, it is a bed

children, is portable and comes with a case for travelling and,

system that attaches to your child’s bed or blow up mattress

most importantly, looks pretty cool. Available in a wide range

(when away from home). The Safety Sleeper was created by

of colours and with an impressive list of safety features as

a mum who has a child with Autism and allows for the safe

standard, this looks like a fantastic option if you have problems

containment of children who like to wander the house during

keeping your child in their bed at night.

the night or who won’t stay in bed long enough to be able

www.thesafetysleeper.com

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!

Unique Care Kids Beds

SAFE SURROUND PLUS For Space and Safety

Delivery & Set-up Australia wide!

SAFE SURROUND GENIE Specialist Care

How do you make a hospital style bed cool and funky? Powder coat it in attractive colours and add feature headboards, of course! Designed to fit into a bedroom themed for a child, with a choice of headboards, which can be replaced with a more

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.

adult-friendly version when the time comes, the beds also can be accessorised with matching bedside tables and over bed trays to continue the theme. Don’t let the appearance deceive you though, these are still the high quality beds that Unique Care is known for, with the same options to configure the bed to your child’s unique needs. www.uniquecare.com.au

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

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

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Safe Surround Genie – Specialist Care The Safe Surround Genie provides the ultimate in superior nursing care for children and adults. Its adjustable height helps prevent back injuries in carers and it can be lowered to help children learn to transition in and out of the bed when that becomes appropriate. It has 80cm sides and Perspex panels that allow for free eye contact and allow the individual to see around them and not feel boxed-in. It is has a tilting feature, which can assist in the management of reflux and a contoured sleep

Safe Surround Plus Bed The Safe Surround Plus has 98cm, 135cm or 170cm high sides. It is designed for those children with restless motor functions or seriously disruptive behaviours who are physically ambulatory and need a safe environment to both sleep and play. With the roomy internal measurement and door height options, this bed can protect almost any active child from harming themselves. The bed has a height adjustable lying surface, low entrance height for self-transfers and contouring bed platform. www.medifab.com.au

platform amongst its many other features. www.medifab.com.au

Introducing the all new ‘Kids Beds’. Designed to appeal to children’s imaginations and sense of fun, with colour coordinated powder coating and kid style head boards.

We took our popular Standard Bed and added colour and design. However, underneath it all, the same high quality components and reliability remain in place and can be configured by adding optional extras. Kids beds are also available in white powder coating to enable normal colour and shape head boards to be fitted at a later date to transform these beds into adult beds when your kids outgrow the kiddy touch. For more information visit www.uniquecare.com.au or call 03 5248 8369. 9-11 Point Henry Road, Moolap, Victoria 3221, Australia Phone: 03 5248 8369 • Fax: 03 5248 5139 Mobile: 0408 531101 www.uniquecare.com.au

STANDARD INCLUSIONS • Electric adjustable bed height • Personal push button hand control • Quality ‘Dewert’ German made electronics • Removable head and foot boards • Self help pole mounting bracket • Wall bumper • SWL: 200 kg • 10 year structural warranty • 5 Year electrical warranty

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BLOGS Love That Max: Special Needs Blog A blog about kids with special needs who kick butt www.lovethatmax.com Winner of an impressive list of blog awards, this is an inspiring place to settle down with a cup of tea for a read. Following Max, who has Cerebral Palsy, and his family through their lives with fun and sometimes poignant observational posts, the blog also has useful tips and highlights important advocacy issues. They also run a blogger linkup over the weekends.

Fighting Monsters With Rubber Swords Schuyler is my weird and wonderful monster-slayer. Together we have many adventures. www.schuylersmonsterblog.com It seems that blogging about parenting in general is very much in the female domain so it is refreshing to come across this pithy and insightful blog written from a dad’s perspective. Rob Rummel-Hudson has also written a book called Schuyler’s Monster: A Father’s Journey with His Wordless Daughter (St Martin’s Press, 2008). His posts also appear on the site: www.supportforspecialneeds.com

Uncommon Sense A somewhat sarcastic and mostly honest look into our lives niederfamily.blogspot.com.au A blog about the Nieder family and their daughter, Maya (undiagnosed). A very large section is devoted to their AAC/communication journey, with lots of really great information, ideas and advice. There are also some fantastic thought-pieces including a mustread response to ‘Welcome to Holland’.

love

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Breaking down the

9 FACTS YOU 1

The Pharmaceutical Benefits Scheme (PBS) aims to provide all Australians with timely access to a wide range of affordable and cost effective medicines. In 2013-14, 210 million PBS prescriptions were subsidised.

2 3

In 2013-14, the PBS cost $9.15 billion.

Under the PBS in 2015, the maximum cost for a pharmaceutical benefit item at a pharmacy is $37.70 for general patients and $6.10 for concessional patients, plus any applicable special patient contribution, brand premium or therapeutic group premium. The patient contribution rates are adjusted on 1 January each year in line with inflation. There is no limit to the number of PBS subsidised medicines that a patient can access during a year. It is the responsibility of the individual patient’s treating doctor to ensure that any medicines are prescribed within the PBS listed restriction. There is also a safety net for high users of PBS medicines which reduces the out-of-pocket costs for patients once they reach a certain level of usage depending on their eligibility.

In 2013-14, the PBS subsidised around 770 medicines available in more than 2,040 forms and marketed as more than 4,780 differently branded items.

Currently, the most expensive item on the PBS is a medicine called Soliris® (eculizumab), used in the treatment of atypical Haemolytic Uraemic Syndrome (aHUS). aHUS is a serious and often fatal disease that severely damages vital organs like the heart, brain and kidneys. If the Australian Government did not subsidise this medicine, a patient would pay an average yearly cost of $500,000 for a course of treatment.

An application to have an item listed on the PBS can be made for any medicine for any use for which it is registered on the Australian Register of Therapeutic Goods at the time of listing. The Pharmaceutical Benefits Advisory Committee (PBAC) is an independent expert body appointed by the Australian Government. Members include doctors, health professionals, health economists and consumer representatives. Its primary role is to recommend new medicines for listing on the PBS. No new medicine can be listed unless the committee makes a positive recommendation. The PBAC meets three times a year, usually in March, July and November. When recommending a medicine for listing, the PBAC takes into account the medical conditions for which the medicine was registered for use in Australia, its clinical effectiveness, safety and cost-effectiveness (‘value for money’) compared with other treatments. The PBAC may reject an application or make recommendations regarding a medicine’s uses and any conditions or restrictions

SPRING/SUMMER 2015

complexities of the PBS

NEED TO KNOW on those uses and the Minister of Health can only approve the subsidy of a medicine in line with that independent recommendation. The Minister (or delegate) considers pricing matters following PBAC meetings. A ceiling price or price range for an item that has been approved by the PBAC following negotiation may be recommended by the Minister (or delegate). The decision to subsidise an item is considered by Cabinet if the net cost to the PBS is greater than $20 million per year, and then determined by the Minister for Health. The Government also exercises a number of controls to manage the overall cost of the scheme. Based on this advice, the PBS specifies which medicines and for which indication, are subsidised by the Australian Government. This information is contained in the PBS Schedule, which is updated monthly.

Some of the reasons as to why a medicine is not considered by the PBAC (and therefore not listed on the PBS) include:

• No application being submitted to the PBAC by the medicine’s sponsor. • The PBAC not recommending the listing. • The medicine only being approved for certain indications.

The PBAC considers submissions from industry sponsors of medicines and medicinal products, medical bodies, health professionals, private individuals and their representatives. However, for new products or new indications, it is normally the sponsor or manufacturer who holds the data required for such a submission. Sponsors usually engage public health and health economics experts to review the academic literature and help the company prepare a submission to PBAC. These guidelines are primarily to assist these people in their task. Although the guidelines have been written for the pharmaceutical industry, they are also intended to help PBAC assess submissions and provide information to other interested stakeholders, including clinical and patient groups, and the general community. Guidelines for preparing submissions to the PBAC can be found at www.pbac.pbs.gov.au

There are a number of ways that people can obtain assistance from the Government with the cost of their medicines. These include: • PBS safety net thresholds The cost of all PBS medicines dispensed to a patient during

a calendar year (1 January to 31 December) goes towards meeting the PBS safety net threshold. The PBS safety net is intended to protect patients and their families who require a large number of PBS medicines over a calendar year. The safety net thresholds for the 2015 calendar year are currently $366.00 for concessional consumers and currently $1,453.90 for general consumers. The threshold is indexed each year on 1 January, in line with inflation. • Concessional patient safety net thresholds When a patient and/or their family’s total applicable copayments reach the amount of $366.00, they may apply for a safety net entitlement card and may receive pharmaceutical benefits free of charge for the rest of that calendar year. • Generalpatient safety net thresholds When a person and/or their family’s total applicable copayments reach the amount of $1,453.90, they may apply for a safety net concession card and pay the concessional co-payment amount of $6.10 plus any applicable premium for pharmaceutical benefits for the rest of that calendar year. • Public hospitals The Australian Government provides funds to the states and territories to assist with the costs of providing public hospital services. A patient’s treating doctor may wish to make an application to a local public hospital for assistance with the cost of any treatments which are not available through the PBS. • Section 100 Remote Area Aboriginal Health Services (RAAHS) and PBS Co-payment Measure Under the RAAHS Program clients of approved remote area Aboriginal Health Services (AHSs) are able to receive medicines from the AHS, without the need for a normal PBS prescription form, and without charge. The PBS Copayment Measure operates mainly in urban and rural areas, and provides benefits to eligible Aboriginal and Torres Strait Islander patients through access to cheaper PBS medicines. Eligible patients who would normally pay the full PBS copayment (currently $37.70 per item) will pay the concessional rate (currently $6.10 per item). Those who would normally pay the concessional price receive their PBS medicines without being required to pay a PBS co-payment. • Life Saving Drugs Programme (LSDP) Through the LSDP, the Australian Government provides subsidised access, for eligible patients, to expensive life saving drugs for very rare life-threatening conditions. The treating physician must submit a completed reapplication form to the LSDP by 1 May every year if they wish their patients to continue to receive subsidised treatment through the LSDP.

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Special Needs

TEACHER

We were overwhelmed by the number of nominations we received, which is just brilliant as we are planning to continue to feature our amazing teachers in each issue of Source Kids. It is also so encouraging to see how many fantastic teachers there are out there. They definitely deserve their moment in print!

Focus

Julie Crockett (Inclusion Support Assistant) Ages you teach: Three and half to five years How long have you been teaching for? I’ve worked as a Special Needs Assistant for the past seven years in the early childhood sector. In my thirties I lectured in the Visual Arts, as well as facilitated many community based arts projects in regional areas of WA. What is your teaching philosophy?

For the first in this series of articles we have chosen to feature Nicole Koy, Director of C&K Peregian Springs Community Kindy and Inclusion Support Assistant Julie Crockett, who along with Natalie Taylor, have been the wonderful teachers who have guided and supported Amy throughout two years of Kindy – they won the Queensland C&K Excellence Award for Inclusive Practices award earlier this year too! I had a quick chat to Nicole and to Julie about their teaching roles.

I have a very humanitarian outlook in relation to Inclusive Practices. For me it’s about equality – the fundamental right to belong; to be a part of the group and to have equal access to what everyone else has. We still live in a society and culture that promotes differences in an exclusive way, in order to use them as a platform for discrimination and separation. So how can we break down these perceptions and promote ‘difference’ as a form of connection and something to celebrate rather than fear? What is your favourite activity to do with the children? Anything artistic and imaginative. How do you support a special needs child within a mainstream environment? It requires a committed and holistic team approach to create an environment that holds a space of understanding and acceptance for the child and their family. Clear and ongoing observation is very important in getting to know a child, their likes and dislikes and other valuable information about their individuality and uniqueness. To be willing to understand what it’s like to be in their shoes, in their bodies. Acknowledge these differences and accept that their world/reality may be very different from what we perceive. This enables the educators to be positive role models for the other children (and parents). We are a vital pathway that connects the other children more meaningfully with the special needs child and strengthens their relationships. To model compassion and understanding with everyone. Everyone is a valued member of the group and everyone contributes and brings different things to the group. What do you wish parents would tell you about their child at the beginning of the school year? As much detail as possible about the personality of their child. The more information about them and their idiosyncrasies, the more resourceful and supportive the staff can be. What’s your favourite part of your job? I enjoy seeing all the small, yet amazing and heart-warming interactions that go on amongst the children. How they are

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naturally kind, caring and loving towards others, no matter what their differences are. Are there any toys/books/products you recommend? I’m a big fan of utilising the natural environment as a great learning and teaching resource.

Nicole Koy (Centre Director and Teacher) Ages you teach: Three and half to five years How long have you been teaching for? About 20 years What is your teaching philosophy? Start by building strong relationships – children feeling safe – secure – them exploring, experimenting confidently – teachers carefully observing and adding equipment, information and provocations to enrich understandings and development. What is your favourite activity to do with the children? When I was a child I loved my dance and speech and drama lessons, so activities involving acting and music with the children are lots of fun. How do you support a special needs child within a mainstream environment? Be willing to change anything and everything in both the environment and then routine/program. If something is not working, change it – everyone will benefit. Intentionally teach respect for diversity and work to model it. What do you wish parents would tell you at the beginning of the school year? Detailed information about their child’s temperament. What’s your favourite part of your job? Seeing the children getting along, working together harmoniously, and displaying respect and empathy. I hope these will be lifelong skills.

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Are there any toys/books/products you recommend? Books about feelings and emotions: Annie’s Chair – Deborah Niland The Sad Little Monster & The Jelly Bean Queen - Kym Lardner Silly Billy – Anthony Browne The Brothers Quibble – Aaron Blabey Sand timers – for waiting for a turn/sharing Rainbow Ring for cooperative games Julie and I work as a collaborative, with me, as Director/ Teacher, managing the environment and, through the choices I make (timing of the routine, purchasing of equipment, information I make available to parents for example) and the intentional teaching strategies I employ, (how I talk to the children, how I interact with staff, what I do and say), creating an atmosphere and climate of respect, warmth and tolerance, so Julie can have the materials, space and time to support Amy.

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3D Feel & Find $42.50 The Award-Winning 3-D Feel & Find game features a reusable cloth bag, which contains 20 matching wooden shapes and printed tiles.

Wiggling Worm Grasping Toy $9.95 It’s easy to twist and turn this wooden worm’s eight sections into different positions and form creative shapes!

www.elizabethrichards.com.au

www.thetoybug.com.au

GumFun Finger Strengthener – $34.95 The GumFun is perfect for building small muscles of the fingers and hands, developing tactile discrimination, motor planning skills and colour-matching awareness while also building fine motor skills like in-hand manipulation, separation of the power and precision sides of the hands, lateral and pincer grasps and more.

Magnetic Crane $54.50 This wooden magnetic crane is of a unique design which is easy to operate and control with picking up, shifting, piling up and putting down the wooden blocks. www.windmill.net.au

FINE MOTOR SKILLS

Squiggle Wiggle Writer $15.50

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Products

The Squiggle Wiggle writer is a great tool for developing pen and pencil grasp. This pen vibrates, enhancing movement awareness of the hand. www.mydiffability.com.au

Oogi by Moluk – $11.95 (Junior) $19.95 (Regular) Oogi is an irresistibly tactile and wonderfully expressive new figure toy. With suction cup head, hands and feet, and long stretchy arms, it connects to any smooth surface. Oogis happily live and play in the bathtub, on fridges or mirrors. www.everydaykids.com.au

First Shapes Puzzle $17.95

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

This brightly coloured Melissa & Doug First Shapes Puzzle is designed to intrigue any little one. With a matching coloured picture underneath and extralarge knobs for little hands. www.thetoybug.com.au

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Wash and String $22.95 The wooden string set includes 12 brightly coloured, chunky wooden beads shaped like common articles of clothing, a cotton lace, and a wooden needle and stopper piece.

Twist and Write Ergonomic Pencil $8.95 Pack of two ergonomic pencils. The wishbone shaped design forces the school taught ‘tripod’ writing position. With built-in erasers.

www.thetoybug.com.au

www.windmill.net.au

Lacing Apple $9.99 The Lacing Apple is a fun and very cute fine motor practice tool - this little worm will help your child develop their fine motor skills and hand-eye coordination.

GoGo Dragon Blocks RRP $43.95 Make many different dragons fitting these blocks with pegs and holes. 24 blocks. www.windmill.net.au

www.mydiffability.com.au

Magnatab – A-Z Uppercase $39.95 Kids writing their first letters will get helpful up, down and sideways instructions via easy-tofollow arrows. www.bamkins.com.au

Shoe Lacing Puzzle $8.95 Help little ones learn and practice shoe lacing skills with this great Shoe Lacing Puzzle. www.thetoybug.com.au

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

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SPRING/SUMMER 2015

PFIC Yolanda’s Story Imagine being unbearably itchy – think of being bitten by thousands of mosquitos without any relief available for months. That was the challenge three-year-old Yolanda faced when diagnosed at five months old with Progressive Familial Intrahepatic Cholestasis (PFIC), a very rare liver disease that causes an extreme and unbearable itch. Just one in 100,000 people are said to suffer from it. “Most children with the condition get a liver transplant,’’ says Yolanda’s mum Melanie. “However at around eight months of age, Yolanda got well and it became apparent she has a form or presentation of PFIC known as BRIC (Benign Recurrent Intrahepatic Cholestasis). This means she has the gene for PFIC but for some reason it can go away on it’s own and it can also return at any point.’’

Melanie recalls Yolanda being an extremely irritable baby who was small for her age and would only sleep for 15 to 20 minutes at a time - an extremely challenging time given Melanie and husband Tas also had son, Apollo, who was two at the time. “She was excessively itchy without any rash on her skin. We were sure she had an allergy of some sort and did liver blood tests just to be safe,’’ she recalls. “I went from thinking it must be the washing powder I use, to she has a serious liver disease and may not survive; nothing prepares you for that! “This itch is all over the body, scratching it does not help and it is there 24 hours a day. Think of thousands of mosquito bites all over your body and when you scratch there is no relief – day in day out! “Watching my little baby in so much pain without being able to help her was torture for her, and for me and my husband to witness. There was no treatment to ease her pain and there was next to no support.’’ Sleep deprivation hit hard, Melanie admits. “Yolanda needed me and wanted me 24/7. It’s fair to say I did not sleep, I was existing on around three or so hours of broken sleep a night,’’ she says. “My husband was amazing but Yolanda wanted me and I was breastfeeding (which was one of her few comforts.) It was torture. I would dread the nights as they were harder than the days, yet days were such hard work.’’ Melanie reports that Yolanda has been 95% itch free and her bloods have been mostly normal since she was 10 months old. The Scarborough toddler loves to dance, play with her dolls, make art works, swim, garden and play with her brother – but unlike most toddlers, her nervous system has been severely impacted by the disease. “Most nights up until the last few weeks she would wake at least twice a night crying and screaming and scratching,’’ Melanie says. “She also could not be in the car for more then five minutes without crying and screaming; it was just too distressing for her. (I think) it may be from the early days where she had many trips to the hospital – she would scream the whole way and just hated being trapped in the car. “This has impacted her daily routine – we just did not go anywhere that is more then a 10 minute drive, which has meant missing out on some important events as it would be too distressing for us to drive most places.’’ A virus or illness can lead to a return of the liver symptoms and itch.

SPRING/SUMMER 2015

“I am conscious about where she plays and avoid play centres or play dates if other children are even a little bit sick,’’ Melanie explains. “We now know she will be ok and worst case scenario is a transplant but having looked into this in depth we want to avoid a transplant at all costs. Melanie says it is frustrating that so little is known about PFIC but that she considers Yolanda lucky in comparison to the plight of some children. “There are cases of other children like Yolanda going 10 years or more without a BRIC episode,’’ she points out. “Then there are other cases where children are sick most of the time. I must point out most children with PFIC are itchy and sick all the time with no relief and no effective treatment. We are grateful for everyday that she is well.’’ She remains hopeful that more research into the condition will take place in the future - she and Debbie Kladis, the mother of another liver disease sufferer, have spent the past two years campaigning for medical trials. “It is so rare that most doctors have never heard of it, let alone have an interest in researching it,’’ she says.

“However, I have been heavily involved as a patient advocate in a new drug trial (LUM001/SHP625) that holds a lot of promise for PFIC and also other liver diseases. “We have managed to get the trial here for Alagilles Syndrome, another rare liver disease. The drug is working for many children in the UK and US and their lives have been turned around. “This is such ground breaking news for the very small PFIC community. “These children who have never slept through the night in their life, whose bed sheets are bloodied every night from all the scratching, who rarely attend school; are well, not itchy, they are sleeping through the night and going to school!’’ Melanie reports the drug company is reviewing a recent decision to stop making LUM001/SHP625 – she says until that is readily available, sufferers remain in limbo. For more information or to connect with Melanie, you can join the Facebook page for PFIC and BRIC in Australia and New Zealand.

SPRING/SUMMER 2015

What’s on Calendar 8 – 14

National Psychology Week This week aims to increase public awareness about psychology, psychological issues and the role psychologists play in community wellbeing.

www.psychology.org.au/psychologyweek

14 – 15

Accessibility Weekend Now in its 10th year, Accessibility Weekend sees attractions across Victoria open their doors for free to people with a physical disability who use a wheelchair and their carer to celebrate access and inclusion. accessibilityweekend.com.au

Join us at walk.jdrf.org.au #JDRFOneWalk

Rob Palmer says “One Walk is a fun family day where T1D is the main event. What could be better than that?”

NSW Disability Industry Innovation Awards These awards are delivered by NDS in partnership with the NSW Government and celebrate the achievements of individuals and community-based organisations that make a difference in the lives of people with disability. www.nds.org.au

25 Nov

National Disability Awards

November 5 – 30

Walk to Cure Diabetes Each year the Juvenile Diabetes Research Foundation joins with 8,000 friends, family and colleagues around Western Australia for a healthy day of fun family activities to support type 1 diabetes research. www.jdrf.org.au/walk

1 Nov – 25 Dec Giving Box

The Uniting Care Christmas Appeal, Giving Box, has been a gift giving campaign, offering support to disadvantaged people, especially children. The campaign runs in all Target and Target Country stores through November and December to make Christmas more special for thousands of Australians. www.givingbox.com.au

These awards are held each year as part of the International Day of People with Disability. The awards aim to honour and recognise the outstanding achievements of individuals and organisations that have improved the lives of people with disability. www.idpwd.com.au/awards/

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January

December 3

December 3 is a United Nations sanctioned day aiming to promote and support those who experience disability. The day also aims to increase awareness of the need for integration of people with disabilities in every aspect of life. www.idpwd.com.au

Happy New Year and welcome 2016! Wishing our readers a bright and exciting year ahead.

International Day of People with Disability

News Years Day

Australia Day Join the rest of the country to celebrate our national day! There will be no shortage of events, check out the Australia Day website to find events closest to you.

www.australiaday.org.au

International Volunteer Day This day is an opportunity for individual volunteers and volunteer-involving organisations to promote their contributions at a local, national and international level.

www.dosomethingnearyou.com.au

Christmas Day

For a customer service experience as unique as your child’s needs.

Merry Christmas to all our readers, supporters and advertisers, thank you for your

support in 2015 and we look forward to bringing you a bigger and better Source Kids in 2016! From the Source Kids team

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SPRING/SUMMER 2015

TOUCHED BY OLIVIA Creating playspaces for all

As the weather warms up and we venture outside to enjoy the sunshine and fresh air, the work of one foundation that is improving outdoor playspaces for all is realised.

The Touched by Olivia Foundation was created by John and Justine Perkins in 2006, following the loss of their baby daughter Olivia. They were inspired to create happier, healthy lives for all children across Australia, through play. There are many playspaces in Australia that do not meet the needs of their community. Children with disabilities and childhood disorders, along with the changing demographic of stay-at-home carers, means these playspaces need to evolve. That is exactly what the Perkins family has set out to achieve through the foundation. Touched by Olivia has created a unique model to deliver special places that change the way our society plays, to encourage and invite social inclusion through play. This model involves bringing together communities, government and corporate Australia to deliver these playspaces for all. The program goes beyond simply installing a liberty swing and a few ramps up to a slide. It’s about designing and creating custom made, accessible and intergenerational play equipment and amenities, incorporating accessible pathways, passive areas, sensory and tactile play and artworks, graduated challenges, points of recognition and visual cues, fencing, accessible parking and bus drop off zones. The foundation’s Executive Officer Bec Ho said “The foundation has already created 15 playspaces and will open its 16th next week in Western Australia in the City of Swan.”

“The process usually starts when someone approaches us, then we become the playmakers, bringing everyone together to play and create great spaces that are inclusive of all needs.” Like many foundations, one of the greatest challenges faced by Touched by Olivia was resourcing and with just one paid employee, the workload was high. A much-needed corporate grant allowed the foundation to grow its team to six, increasing its capacity further. Over the years, Touched by Olivia has branded its playgrounds Livvi’s Place Inclusive Playspaces and provides a unique environment for children of all ages and all abilities to play sideby-side. The playspaces are created based on six principles that were developed in 2012. These were developed by the foundation in conjunction with leading academics, practitioners, not for profit and NGO’s to guide best practice for decision makers. The principles are: 1. Everyone can play 2. Access to nature 3. Total experience 4. A connection to community 5. Play independence 6. Friendship When asked what the ultimate goal of Touched by Olivia was, Bec said “To be redundant and not exist, because every playground would be built accessible for all.” That is an unusual goal to have for many organisations, but Bec says it is less about employment and positions and more about solving a social need. To find out more about Touched by Olivia or to support the fantastic work they do, visit www.touchedbyolivia.com.au or like them on Facebook at Touched by Olivia.

SPRING/SUMMER 2015

Life after SCHOOL Transitioning to life after school is a massive process for any child - and their parents. Deciding what to do with their lives, where they’ll live, managing transport, learning to drive, first loves (gulp!) and the multitude of other aspects of becoming fully fledged adults ready to fly to coop. It may be daunting for the family as they release what was once their precious baby into the world, but it is a pretty well-worn path. Kids grow up. It’s the way of the world. If you have a child with special needs it’s slightly more complicated. From the moment you got onto the special needs treadmill, your special needs world has been fairly tightly managed. There have been some decisions to make, but generally, you are steered by paediatricians, support agencies and therapists. You’ve learnt

Now, before you freak out, I just want to insert here that transitioning isn’t a once off thing. It is a process that will begin in high school and, hopefully, create a seamless merge into your child’s adult life. This article will give you a few ideas of where to go and things to start looking into so that this transition is an exciting and positive one.

What to do all day? After 12 years of a fairly consistent routine, suddenly nothing is certain. While school may have provided some challenges, it has been an expected and constant part of your child’s day-to-day life for most of it. And now there is no legislated place for them to be all day. This is exciting but also one of the most daunting parts of the process. The level of their involvement in their future will obviously differ dramatically, depending on the level of their disability. As with all teenagers, it is a good idea to sit down with them a few years before the end of school to start to discuss what they might like to do with their life and how they see their future. A few options include:

to manage government red tape like a ninja. You can sniff out

Tertiary education

funding sources in the dark. You tap dance through IEPs and

medical professionals, therapists, funding sources and educators

Studying after school is a real option for many young people with disabilities. Universities offer a wide range of assistance including support with note taking, assistive technology, alternative print formats and participation assistance. Other options include TAFE diplomas and certificates.

you have previously known, forged relationships with, learnt to

Work

tolerate with a fake jollity, are no longer going to be a part of

There are specialised employment agencies including the Endeavour Foundation and Epic who can assist your child to find employment. They can also help to ensure that your child is fairly paid, properly supported and is receiving their correct government mandated superannuation.

advocate like no-one’s fool.

And now everything is about to change. I don’t mean to sound alarmist here, but this is big. Most of the

your lives. You won’t go to the same hospital anymore. And there will no longer be a safe place where your child gets to go every day during term time, to be stimulated and learn in a nurturing environment. And where will they live?

SPRING/SUMMER 2015

Vocational training centres There are a number of centres in Australia that offer vocational training and employment opportunities. Centres such as the Compass Institute in Queensland have a farm, grow produce, run a café and a shop.

organisations such as the Endeavour Foundation, Able Australia and Youngcare have been doing incredible work to ensure that there are real housing options that cater for care needs but also provide an attractive living environment. Hopefully this trend will continue.

Life skills programs

Medical

If your child is unable to participate in the workforce, they may find some real satisfaction, enjoyment and community in a program that will help to guide them towards being more selfsufficient and give purpose to their days. As with everything, you are going to need to do your research to find one that is a good fit for you and your child.

Your GP is your friend. By now, I’m sure you’ve got their mobile

Social and community involvement

paediatrician to case manage and there will not be the same

Participating within the wider community can allow for a real sense of belonging and friendships can be forged. Continuing on with something they enjoyed at school – being it soccer or drama – and finding a group or organisation in your community can be

team approach to caring for your child.

a great place to start.

You will need to be referred to the adult service of each of the

Working out goals ahead of time will mean that you can start working together to put a plan in place to help your child’s hopes and expectations meet their abilities.

faculties you see. Meet with the adult health care professionals

Where to live?

in your favourites but your relationship is about to get a whole lot closer. Your GP will be the one medical constant, who will have known your child as a child and will be able to assist in the transition to adult services. They are still the person to get your referrals from – especially now as there won’t be any

Start planning your transition well in advance. Ideally you have a health care coordinator at your hospital, but if not, your paediatrician should be able to help you with this process.

in advance of the change, preferably with the paediatric health care professional who currently attends to your child, to ensure a smooth hand-over and transition. All your child’s medical paperwork must be transferred from the paediatric health care

Nowadays, with the cost of housing being so prohibitive, it is entirely possible that you have a tribe of neurotypical children planning on camping out in the family pad until they’re 30 – enjoying free WiFi and laundry service on tap. But even that indefinite imposition on your hospitality and good nature has some kind of (possible) end date. At some point, they will grow up (surely), save up a deposit (hopefully), find a home of their own (please!). Of course, depending on the severity of your special needs child’s disability, their forever home will require a little more forethought and planning. So, when it comes to where your child is going to live, long-term, what are the options?

professionals to the adult health care professionals.

At home

When your child turns 18, they become an adult and legally

The majority of young people with disabilities remain in the family home with a parent as their primary carer. Often because it seems like the only way to go. To make this work as a long term option, and to make sure you don’t burn out, it is important to ensure that your home is properly set up to manage the physical demands of the caring job – especially as you begin to age and the toll becomes harder on your body. It is also important to organise proper respite so that you can have a break and your own life. Ensuring that your child gets out during the week to attend work, activities or programs will mean that they will have a more meaningful and enjoyable life – and you will have time to yourself. There are programs and grants available to help.

entitled to make their own decisions. If your child is incapable

Supported Accommodation

Your child will be encouraged to take more of an active role in their own medical care, to the best of their ability.

Legal Wills, trusts and guardianship This is a good time to get some legal advice and make some plans for the future if you haven’t done so already. Working out who will take legal responsibility for your child and how they will be supported financially into the future is imperative.

of making decisions in their own best interest you may want to apply for legal guardianship. Guardianship may not be necessary in the case of informal decisions or when all interested parties agree. A special disability trust can be set up for a child with a severe disability, to provide for your child in the event of your death.

Funding You will need to chat to Centrelink before your child turns 16, as funding allowances change. Your child may be eligible for the following funding once they turn 16:

Living as independently as possible is a goal for many families. What this looks like can vary considerably depending on your child’s abilities and care requirements.

• Disability Support Pension

While there has been a lot of coverage on the shortage of housing for young people with disabilities in Australia,

• Mobility Allowance

• Pensioner Education Supplement • ABSTUDY • Youth Allowance

SPRING/SUMMER 2015

PEOPLE POWER WIN OVER GOVERNMENT IN MEDICINAL CANNABIS FIGHT

Health Minister Susan Ley said the Government would create

A ‘farm to pharmacy’ approach for the legalisation of medicinal cannabis has been confirmed by the Federal Government to replace an existing black market model.

a Commonwealth licensing scheme within the Department of Health to ensure cultivation meets Australia’s international obligations. Ms Ley said the Government would closely manage the supply of medicinal cannabis products from “farm to pharmacy”.

In a major win for those with severe and debilitating illness and disability, patients across Australia will soon have access to a ‘safe, legal and sustainable supply of locally-produced products’ for the first time. Prime Minister Malcolm Turnbull announced in October that his government would seek parliamentary support to allow the controlled cultivation of cannabis for medicinal or scientific purposes in Australia.

“This will be done in conjunction with necessary state or territory regulations and there will be discussions at the next COAG about how this can progress,’’ she said. “This Government is incredibly sympathetic to the suffering of those Australians with debilitating illnesses and we want to enable access to the most effective medical treatments available. “Allowing the cultivation of legal medicinal cannabis crops in Australia under strict controls strikes the right balance between patient access, community protection and our international

Those fighting for urgent change hope that products could be

obligations.”

available as early as next year and have urged the government

Consultation is underway on a draft bill, with a final version

to expedite the process.

expected to be voted on by Parliament by the end of the year.

As we go to print, the Government is finalising draft

Ms Ley said supply of unregistered medicinal cannabis products

amendments to the Narcotics Drugs Act 1967 to allow for what

for clinical trials and specific patients would continue to be

many disability advocates have labelled a life-changing and life-

managed in accordance with current provisions under the

saving product.

Therapeutic Goods Act 1989.

SPRING/SUMMER 2015

Ms Ley said the registration of new medicinal cannabis products would also continue to be regulated by the Therapeutic Goods Administration (TGA), in the same way other new medical drugs and devices were. “It’s important we maintain the same high safety standards for medicinal cannabis products that we apply to any other medicine” Ms Ley said. “I’m sure Australians would be concerned if we allowed medicinal cannabis products to be subject to lower safety standards than common prescription painkillers or cholesterol medications.” The government reiterated it had no plans to legalise the recreational use of cannabis. REACTION Nicole Cowles gives her nine-year-old daughter Alice cannabis oil to treat seizures associated with a rare condition called CDKL5, which triggers frequent serious seizures – sometimes up to 30 a day and occasionally lasting up to an hour. She is the President of Medical Cannabis Users Association of Tasmania. “We need locally grown cannabis in support of our agricultural industry, locally made oils (etc), local patient supply of high quality purified treatments specific to their particular medical needs,’’ she said. “If trials are to be conducted – they need to be relevant to real patient needs and involving a cross section of the community. “Let’s not waste time and money on this – we all know medical history is being made here – so let’s focus on making history that improves the quality of life of patients who deserve treatment right now. “I have expressed my fears that our current supply of quality, medical grade cannabis, which is being supplied to patients across Tasmania and Australia, does not meet patient demand. And with growing demand, seriously ill patients have no choice but to turn to street grade options available through the black market. “It is irresponsible of our governments to not act more proactively to meet the needs of current patients – as the risk of exposure to contaminants (e.g. ICE) from products sourced through the black market is terrifying.’’ “The government’s wheels turn too slowly for us, our community wheels are turning much faster and patients and carers across our state are helping to support other patients and carers. “Let’s hope that the governments of Australia truly are taking a proactive and patient focussed approach to the delivery of high quality cannabis medications available to all Australians for the long term benefit of all.’’

SPRING/SUMMER 2015

DIRECTORY AIDS AND EQUIPMENT Korthotics

5/10 George Street Leichhardt NSW

02 9569 3672

www.korthotics.com.au

Medifab

26 Pardoe Street East Devonport TAS

1300 543 343

www.medifab.com.au

Special Needs Solutions

12 Everest Drive Southport QLD

07 5527 9794

www.specialneedssolutions.com.au

Little Big Feet

6/2069 Moggill Road Kenmore QLD

07 3378 5935

www.littlebigfeet.com.au

Wonsie Bodysuits

Sydney NSW

0409 309 129

www.wonsie.com.au

JettProof

PO Box 5281 Kahibah NSW

1300 667 687

www.jettproof.com

Unit 26 9-12 Lambridge Place Penrith NSW

02 4708 2451

www.cleverstuff.com.au

Life Without Barriers

352 King Street Newcastle NSW

1800 WE LIVE

www.lwb.org.au

Paediatric Therapy and Workshops

Geelong VIC

0412 751 741

www.paediatricworkshops.com.au

ACD (Association for Children with a Disability)

Suite 3, 98 Morang Road Hawthorn VIC

03 9818 2000

www.acd.org.au

Angelman Syndrome Association

PO Box 554 Sutherland NSW

02 8521 7463

www.angelmansyndrome.org

ARC Disability Services Inc

92 Little Street Manunda QLD

07 4046 3600

www.arcinc.org.au

Association of Genetic Support Australasia

66 Albion Street Surry Hills NSW

02 9211 1462

www.agsa-geneticsupport.org.au

Ausdocc Inc.

10 High Street Seaholme VIC

0428 579 121

www.ausdocc.org.au

Australian Kabuki Syndrome Association Inc

13 Lockwood Road Erindale SA

Australian Leukodystrophy Support Group

PO Box 2550 Mount Waverley VIC

1800 141 400

www.alds.org.au

Australian Mitochondrial Disease Foundation

Suite 4, Level 69, 13 Young Street Sydney NSW

1300 977 180

www.amdf.org.au

Autism Awareness Australia

PO Box 288 Seaforth NSW

02 9904 8700

www.autismawareness.com.au

1800 277 328

www.autismspectrum.org.au

CLOTHING AND ACCESSORIES

EDUCATION Cleverstuff Educational Toys

PROFESSIONAL SERVICES

SUPPORT SERVICES

Autism Spectrum Australia (ASPECT)

www.kabukisyndromeassoc.com.au

Autism Tasmania

PO Box 514 Moonah TAS

03 6278 9985

www.autismtas.org.au

Beyond Blue

PO Box 6100 Hawthorn West VIC

1300 224 636

www.beyondblue.org.au

CARA

98 Woodville Road Woodville SA

08 8347 4588

www.cara.org.au

Cerebral Palsy Australia

Level 39, 259 George Street Sydney NSW

02 8259 7725

www.cpaustralia.com.au

Cerebral Palsy League

55 Oxlade Drive New Farm QLD

1800 272 753

www.cpl.org.au

CHARGE Syndrome

PO Box 91 Glenfield NSW

02 9605 8475

www.chargesyndrome.org.au

Cornelia De Lange Syndrome Association (Australasia) Inc

PO Box 20 Putney NSW

02 9809 0287

www.cdlsaus.org

Cri Du Chat Support Group of Australia

104 Yarralumla Drive Langwarrin

03 9775 9962

www.criduchat.asn.au

Deaf Australia

PO Box 1083 Stafford QLD

07 3357 8277

www.deafau.org.au

Deaf Children Australia

PO Box 6466 St Kilda Road Central VIC

1800 645 916

www.deafchildrenaustralia.org.au

Down Syndrome Australia

219 Napier Street Fitzroy VIC

1300 658 873

www.downsyndrome.org.au

Epilepsy Australia

20 Charrington Court Baulkham Hills NSW

1300 852 853

www.epilepsyaustralia.net

Extended Families Australia

1/95 Bell Street Coburg VIC

03 9355 8848

www.extendedfamilies.org.au

Foundation for Angelman Syndrome Therapeutics Australia

PO Box 248 Salisbury QLD

1300 078 108

www.cureangelman.org.au

Hummingbirds

179 Dart Street Redland Bay QLD

0412 363 856

www.hummingbirdseies.com

Langford Support Services

PO Box 717 Moonah TAS

03 6228 9099

www.langford.org.au

SPRING/SUMMER 2015

Learning Difficulties Coalition

PO Box 140 Westmead NSW

02 9806 9960

www.ldc.org.au

Lifeline

PO Box 173 Deakin ACT

13 11 14

www.lifeline.org.au

Life Without Barriers

352 King Street Newcastle NSW

1800 WE LIVE

www.lwb.org.au

Lions Club Australia

31–33 Denison Street Newcastle West NSW

02 4940 8033

www.lionsclub.com.au

Mamre Association Inc

40 Finsbury Street Newmarket QLD

07 3622 1222

www.mamre.org.au

Prader-Willi Syndrome Association

VIC 0451 797 284 www.pws.asn.au

Rare Voices Australia Ltd

Suite 2, 3 The Postern Castlecrag NSW

02 9967 5884

www.rarevoices.org.au

Rett Syndrome

PO Box 855 West Perth WA

08 9489 7790

Royal Far West

19-21 South Steyne Manly NSW

02 8966 8500

www.royalfarwest.org.au

SAKKS – Supporting Aussie Kids with Kabuki Syndrome

PO Box 318 Rundle Mall SA

0422 608 858

www.sakks.org

Spina Bifida Foundation

Victoria Level 4, Ross House, 247 Flinders Lane Melbourne VIC

03 9663 0075

www.sbfv.org.au

Steve Waugh Foundation

Level 11, 17 York Street Sydney NSW

1300 669 935

www.stevewaughfoundation.com.au

Syndromes Without A Name (SWAN)

Australia PO Box 390 Fairfield

0404 280 441

www.swanaus.com.au

The Fragile X Association of Australia

Suite 6, Level 3, 39 East Esplanade Manly NSW

1300 394 636

www.fragilex.org.au

The Shepherd Centre

146 Burren Street Newtown NSW

02 9370 4400

www.sherherdcentre.org.au

1300 847 466

www.visionaustralia.org

08 7329 5409

www.wsasa.org.au

Vision Australia Williams Syndrome Association of SA

83A Ridgway Drive Flagstaff Hill SA

Xavier Children’s Support Network

284 Pine Mountain Road MtGravatt East QLD

Young People in Nursing Homes National Alliance

207 City Road Southbank VIC

0437 178 078

www.ypinh.org.au

Ability First Australia

Level 39, 259 George Street Sydney NSW

1800 771 663

www.abilityfirstaustralia.org.au

AEIOU Foundation for Children with Autism

Central Office: N70 Recreation Road Nathan QLD

07 3320 7500

www.aeiou.org.au

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

603-605 Nicholson Street Carlton North VIC

03 9387 1734

www.melbourneot.com

Movement Solutions

Shop 1/26 Eva Street Coorparoo QLD

07 3324 2490

www.movementsolutions.com.au

Nacre Consulting

8 Steele Street South Caulfield VIC

0448 316 319

www.nacre.com.au

OCC Therapy

PO Box 118 Kenmore QLD

07 3378 9543

www.occtherapy.com.au

Paediatric Therapy and Workshops

Geelong VIC

0412 751 741

www.paediatricworkshops.com.au

St Giles

65 Amy Road Launceston TAS

03 6345 7333

www.stgiles.org.au

The Therapy Place

508 Canterbury Road Vermont VIC

0421 127 628

www.thetherapyplace.com.au

Therapies for Kids

37 Nelson Street Annandale NSW

02 9519 0966

www.therapiesforkids.com.au

0410 788 844

www.tlcpsychology.com.au

www.xcsn.org

THERAPY PROVIDERS

TLC Psychology P/L Australia wide

TOYS AND RESOURCES ARC Toy and Library Resource Centre

92 Little Street Manunda QLD 07

4046 3600

www.arcinc.org.au

Cleverstuff Educational Toys

Unit 26 9-12 Lambridge Place Penrith NSW

02 4708 2451

www.cleverstuff.com.au

My Diffability

PO Box 3121 Caroline Springs VIC

03 8456 6613

www.mydiffability.com.au

SenseAbilities

12 Winyard Drive Mooroolbark VIC

03 9726 8047

www.senseabilities.com.au

0400 375 351

ww.thetoybug.com.au

The Toy Bug Windmill Educational Toys and Equipment

265 Charles Street Launceston TAS

1800 333 634

www.windmill.net.au

Zooba

34 Twin Peaks Road Bli Bli QLD

0410 620 240

www.zooba.net.au

SPRING/SUMMER 2015

C Book Review

BECOMING CHIEF

How to lead your child’s special needs tribe Available at www.nacre.com.au Cathy Love, Occupational Therapist, of Nacre Consulting has just released her first book Becoming Chief. Cathy has written this book “for parents who have a child with a disability and want

real life stories told and practical parent friendly tips shared including: – You are your child’s strongest advocate and fiercest protector. For extraordinary things to happen you need to advocate assertively and lead with skill and determination – you need to Become Chief of your child’s special needs tribe.

the best of everything life has to offer

Cathy Love is an Occupational

their child. It is for parents who want

Therapist, Coach, Speaker and the founding director of

to understand the systems better,

Nacre Consulting. She works with children, families and disability

be more organised, time and money

service providers to create brilliant lives for children with special

savvy and lead their child’s therapy

needs. Her passion is coaching parents to feel strong, informed,

and education teams with greater confidence and skill”.

organised and powerful advocates for their children.

Becoming Chief follows a logical progression through the journey as a parent of a child with special needs: learning about

A copy of Becoming Chief – enter at www.sourcekids.com.au/competitions

the disability, telling others, building your tribe, building your child’s program, staying organised and taking care of yourself. It tackles all the challenges parents face including being overwhelmed by child development experts, complex funding and disability systems, frustration with school and therapy programs. Becoming Chief is written to help parents feel more energised, informed and confident to lead their child’s tribe to the brilliant outcomes you dream of. Tough topics are covered, wonderful

CONSULTING Cathy Love is an occupational therapist, coach and speaker who works with children, families and service providers to get brilliant outcomes for children with special needs. ● Family service coach – Working with parents to set goals, design great programmes, find and use funding and successfully manage their child’s team. ● Clinical supervision and workshops for therapists or teams, face to face or virtual. ● Paediatric Private Practice Business Coaching – Guidance to start, grow, run, or sell your private practice.

a Zooba For the month of November, we are joining our friends at Zooba to give away a Zooba fitball for kids every week during November. Prizes will be drawn each Friday and entry is available online at www.sourcekids.com.au/competitions

Ph 0448 316 319 www.nacre.com.au

SPRING/SUMMER 2015

Tech-Man Michael Young

Protecting your tablet

When I see people wandering around with smart phones and tablets without cases, I can see disaster looming. The manufacturers design our handheld devices so that they are streamlined, thin and feel great in your hand, but it only takes one slip and the device is on the ground, smashed into pieces. You could be lucky and everything turns out all right with no damage caused, but a lot of people will end up with a smashed screen costing $100-200 to repair – or worse, it might not work at all. Most tablets are designed with glass to the edges of the device. This streamlined look has created a weak spot when dropped. There is nothing on the edges to buffer an impact. If you drop a tablet on its back it will likely survive, but if you drop it on its edge the hard surface will push against the glass and cause it

Mercury AV

to crack. The only real way to try to avoid this from occurring

If you don’t need all the protection that the LifeProof offers, my

is to house your device in a well-designed case.

suggestion would be the Mercury AV, or something that offers

When you’re looking for a case make sure that it has adequate protection for your device. The most important places to have case cushioning is on the corners and edges. To increase the life expectancy of your mobile phone, or tablet, you need to invest in a quality case but it doesn’t always have to cost hundreds of dollars.

What case should I buy? LifeProof If you take your device everywhere you go, and that includes being outdoors in all sorts of weather, my suggested case is a LifeProof case (www.lifeproof.com). They are waterproof, drop proof, dirt proof and light. You can take it to the beach, or if you’re brave take it in the pool and they don’t add too much additional weight to the original phone or tablet. I use one with my son’s iPad because it’s mounted on his wheelchair with the optional cradle and if it rains I just have to worry about keeping him dry, the iPad will be fine. He also dribbles a lot on it and to clean it I just run it under the tap and dry it off.

similar features. This case is available from most major retailers and it offers great protection from knocks, while being quite affordable. The Mercury AV case features a colourful, spongy foam which protects all the edges from impact while leaving all the ports easy to access. You also have the option of using a standard screen protector with it if you wish. It incorporates a handle for carrying which doubles as a stand, my son loves it. This case is available for iPad 2/3 and Air, and also Samsung tablets.